Well, here is the first ‘part 2’…Have you seen the Croods yet? If not, you should; super-cute movie, great voices to characters, a story line that appeals to adults as well as children on completely different levels…
But I’m certain my favorite part of the movie is the credits at the end. Why? Well, I should tell you to go watch the movie and check back with me later, but instead I’ll just tell you. Owl City is responsible for the song played during those credits, and I have to admit that yet again, this musical group (I didn’t think I favored), has managed to overwhelm me with a song that dives straight to the depths of my heart.
With words like “Its an open sky, and a reason why you shine your way”
and “All of your tears will dry faster in the sun, starting today”
And my favorite line of the whole song…
“Any time, and anywhere, just turn around and I’ll be there to shine your way…”
you can likely understand the reasons it has rapidly increased playing time in my car and on my phone. Every time I hear it, I think of a different title for it though. I’d call it “This Little Light of Mine, Part II.” My kids play it loud, and sing it louder. But the words seem to fit perfectly with my old favorite by Addison Road. It’s the perfect follow-up; a sequel that we would stand in line to see if we were talking movies!
As the next week approaches, and the count down to day #365 continues I admit I am very scared. I’m scared at the reactions and responses I’ve felt for myself, and seen in my family. I’m stunned at my inability to control, or anticipate the meltdown moments we’ve experienced. I’m shocked that too often I feel less equipped than ever, to nurture and heal and comfort and soothe the aching hearts in my home.
Some moments, I honestly feel like I’m failing my family…again. The first time was November 11, 2012 when my daughter died and I could not safeguard or shield or defend her. I was unable to erase or remove or cure the cancer that invaded her little unprotected body.
Out of my control? Absolutely!
Couldn’t be changed? I know!
Wasn’t mine to own? I understand!
Not my fault? I get it!
Still feeling some guilt because I couldn’t defeat the vicious childhood cancer also known as DIPG? YES!
So, I want you to know this, not just for me and mine, but for others who you may know walking these same paths; for my good friends and their own family following my footsteps only 2 short days behind me; for a family who may possibly follow in my footsteps 2 years later; for those who have worn the dirt path into a smoother journey by traveling the road ahead of me.
I want you to know that in the last weeks you have been more open, honest, and engaging in many instances. You have written the letters I’ve asked for, you’ve stopped me at a mutual friends house or Hobby Lobby or yelled across the parking lot of a grocery store. You’ve taken time to share a story, or a picture (I LOVE pictures), or tell me a memory, or the impact, or introduce yourself to me, or send a card or email or text…or sometimes just to share a hug or your thoughts. What fabulous gifts I have received in those moments! What blessings I have been given! Thank you! I know most times during those interactions I cry; sometimes I am sad, but always I am overwhelmed that you would still care enough to take the time to interact with me.
thank you…for all your energies and efforts
Finally, as I venture in to this next week, that leads me to a date that has been burned to memory, fresh as if it was only moments ago, I keep visualizing the timeline of our lives…this would be the beginning of year 2….
That always sounds wrong for some reason.
I’ve taken liberties in past posts to use a boxing ring as a metaphor to some of what we have experienced. As we continue to take some tough punches in the form of heartbreak, sadness and more ‘forever’ while missing our Caitlin so much, we balance those with the throws we have landed too. They appear in the ‘good’ moments when we laugh, share memories, and enjoy loved ones. They arrive in big and small moments; both expected and unexpected.
So, in honor of those punches received and landed, I give you the second “2” from the title of tonight’s entry…
Since I don’t like ‘year 2,’ I’ve decided to call it Round 2…and appreciate that we’ve won the first round by surviving the blows that have landed on us. In round 2, we’ll kick some butt. Just watch how many throws we land this round! We will start round 2 as round 1 ends, by celebrating a life of a special and boldly loved Caitlin Presley Downing. We will decorate early for Christmas in her honor, as we share stories, among smiles and tears. We will come together as a family remembering the joyful and devastating, as we tie on our gloves, wipe the sweat from our brows and ready ourselves to start as the bell signals a passing of one moment to another.
Thanks for continuing to cheer us on and support us as the bell dings and round 2 gets under way. If it weren’t for all of you, and all your support we would already have been knocked out.
with so much love, d
A quick note: this past week I sat with an incredible mother. She lives a few miles from our home. Her 4 year old was just diagnosed with DIPG. (Please pray for their family.) I told her I hoped her child would be the first miracle in this disease. I told her I would pray for courage, for a cure, for peace, for support. With all my heart I would love to see her be allowed to walk down a different path than my family. But, I promised her that no matter what happens, I will not ever stop fighting when I can, to make a difference in working toward a an end to DIPG. And here is my next step forward in keeping that promise: we are looking into holding a big rummage/yard sale with all proceeds to be given to DIPG research. SO if you’ve got extra junk you’re thinking of getting rid of let me know and I’ll take it off your hands if you’re looking for a place to ‘donate’ it!
A few of my favorite pictures from favorite memories, and a quote that is so meaningful to my tender heart…
When we built our home 8 years ago we strategically placed extra electrical outlets in the garage, close to the entryway to the house. We anticipated the need for additional food storage if our family grew beyond the 2 children we had already been blessed with.
We added a freezer as we added another child. Trips to Sam’s/Costco still prove to keep extra food on hand and available at all times. Well, it’s in my house, but the ‘available’ part of that statement is almost always false. It’s here, but it’s always frozen. I remember to take it out of the freezer about 20 minutes before I want to cook it. Needless to say, that doesn’t work well when my family is trolling about the kitchen hungry and angry (which almost always leads to something my friend calls “hangry”.)
That’s how I’ve felt lately though; like I’m coming out of a longtime freeze and I’m just not ready in time…
not even close…
As the ice starts to melt and I begin to thaw, I can start to ‘feel’ again. Touch, temperature, sound, light, colors…they have begun to get increasingly more intense in the last few weeks. Some days are beautiful and full, cool and comfortable behind a fashionable pair of sunglasses. Other days, well, let’s say I have some days that I’d like to climb back inside that freezer and stay a little while longer.
As this month turns the corner, and Friday crawls closer, I find myself engaging in some behaviors I am surprised with. First, I’m still counting days and months, even though I despise the activity. “The books all say year 2 is worse than the first year.” I’ve said that many times, with a disbelief that ANYthing could be more painful and less tolerable than the last 11 months. In the last few weeks I’ve begun to understand and have found the root from which that stem of knowledge grows from. It is the ‘freeze;’ also known as shock. I was absolutely certain the shock of Caitlin’s death was over after month 2 or 3; afterall, I knew it was coming, right? I was PREPARED (HA!) for the death of my daughter. That was sarcastic, but somewhere deep in my head and my heart I feel I should have been a little better prepared; I knew the statistics and prognosis. I watched her decline and the demise set it at rapid pace, even to my blind eyes.
I’ve also started doing some other things I don’t like to see (and am determined to change once I find the energy.)
Today, I hid; I didn’t leave the house except to get Campbell from preschool. I texted when it was possible, instead of actually picking up the phone. I answered the door one time, for a friend that I expected this morning. She’s very ‘safe,’ and comfortable with my tears, or I would have bailed on that interaction too.
I had a busy weekend. (Pop Warner Homecoming Saturday!) I was social. I engaged A LOT. I smiled (genuinely!). A special birthday for a special friend, complete with surprises and floating lanterns was fun! I didn’t do anything I didn’t want to, I promise. But today, after it was all over, I felt like I needed to disappear. Jeff at work, kids at school; I was so happy to be alone in my house with my anger, and my tears, and my worry, and my resentment…
and my heartbreak.
Tomorrow I will engage again as I head to the kids school to volunteer, and then run errands and then take the kids to football and cheer practice as Jeff works late. I will smile, or maybe I’ll cry. But I will go out, and do what needs to be done. (And for THAT reason alone, you may not worry that I have passed into a ‘worse than bad’ or ‘unhealthy sad’ zone.) But, I will honestly tell you that this one-year-mark scares me terribly.
And, while I’m scared to remember and relive and face the date with all the vividness as if it were yesterday, I am frightened for another reason…
(Please know this is just me thinking out loud; it is not blaming or hateful in any way….)
What do I do when these new and fresh waves of pain wash through the ‘melted me’ as we reach November 11th? How will the second Thanksgiving/Christmas/Birthday/ANY day be any easier than the first without Caitlin?
How about the 3rd? Or the 5th? or the 10th?
What will I do? What am I expected to do? Should I smile and pretend it doesn’t hurt as much anymore? I feel like that’s what I should do…but the pain hasn’t gotten easier or better..
Here’s a big admission, one that my generation will shudder at when it is read. (One that may have my brother on my doorstep faster than he’s ever gotten to me…)
I don’t like Star Wars. I won’t watch Star Wars.
But I have just enough knowledge of the series (and a good friend and brother who verified information for me) to make this next analogy…
Han Solo was pitiful when he was frozen into carbonite by Darth Vader and handed over to Jabba the Hut by Boba Fett. When Princess Leia brought him back out of that freeze, it took him some time to readjust, get his bearings, ‘thaw out’…it took him some time to recover after that freeze wore off…
I’m not as good-looking, don’t make as much money, and will never be as famous…
but I sure do feel like Harrison Ford in that scene of the movie, thawing out after a deep freeze…
uncertain, unaware, vision a little blurry but still having to battle the big guys…
…scared and assaulted by the stimuli everyone else interprets as normal; wanting desperately to hide in the freeze again, but fighting desperately against the pain of thawing out…
with a gentle heart and love to each of you, d
I started to write this a few days ago. As I hid today, I got the file back out, and tried to write again. It didn’t work. I closed the file with a slam of the laptop and a lot of tears. But then, Caitlin and a friend stopped by. She’s been around a lot lately; sensing my misgivings and worries? Just maybe…
Many have seen her high in the sky lately, but my sightings have been scarce in comparison. Tonight, as my phone buzzed and beeped and blinked with another sighting, I sat in the wet grass of my backyard, staring in awe…
I came in and picked my laptop, finished this entry easily and quickly. I thought about the brilliance of the colors in the rainbow this evening. I was warmed with a smile…as I thought that the bright, glowing colors high in the sky tonight are equal to the strength and love and friendship I have been generously given by so many…
thank you my friends; tonight’s sliver of perfection, found as a rainbow, was made by Caitlin, in honor of all you have offered to me, with love and friendship, through strength and and caring…
that photo was taken with my iphone and is completely untouched..
A friend sent me this last picture, saying that she thought it looked like the rainbow went from one side of Oviedo to the other…and, it’s a double…
Not All Pioneers Wear Funny Hats with Raccoon Tails...
- first in any field of inquiry or progress
- to be the first to open or prepare the way
- to take part in the beginnings of; initiate
- to lead the way for a group
At times, Caitlin has been referred as a ‘pioneer’ by many. It is an incredible compliment for me to hear. In fact, she was a pioneer; the first child to undergo a new and innovative clinical trial for DIPG. It involved a new type of approach to treating this life-taking tumor, and the method of attack was brain surgery with an injection of a radioactive antibody.
But the path that Caitlin embarked on didn’t start with Caitlin’s surgery.
Before Caitlin had surgery, there was a little boy named Cristian. He was loved by his parents. He enjoyed trains. He lived in New York, and in 2007, when he was 4 years old, he was diagnosed with Diffuse Intrinsic Pontine Glioma. Cristian’s parents fought to find him treatment. Here, their paths crossed with Dr. Mark Souweidane. Cristian died in 2009.
Cristian’s father refused to accept walking away from the cruel and devastating diagnosis he knew 250 children would receive each year. He refused to not take a stand and make an effort in the fight against DIPG. So he started the Cristian Rivera Foundation.
Because of the fundraising endeavors and the supportive force shown by the Cristian Rivera Foundation toward Dr. Souweidane, research moved forward, and made advancements.
Fast forward to May 1st, 2012: little Caitlin Downing is the first patient in a new and innovative clinical trial. A trial that offers hope to future patients, and a possible promise in an untouched, deadly and uniformly fatal disease. A trial that would not have been possible if it was not for the the Cristian Rivera Foundation. I thanked them back then, and several times since.
Last year, Caitlin and I were invited to attend the annual gala held by the Cristian Rivera Foundation. The mission of the foundation is to help find a cure for DIPG. Their efforts support research, most specifically Dr. Mark Souweidane and his program. Last year I spoke in front of several hundred people about my daughter and my gratitude.
I have been asked to return this year for the annual gala. Cristian’s daddy, my friend John, has asked me to speak again this year. My speech was written in minutes, and even though I’ve only shown it to 2 people, I’ve received exactly the reaction I was looking for when I wrote it.
I would love to share that speech with each of you. I would really love to share that speech with you for the first time on September 30th in New York City at the 5th Annual Cristian Rivera Foundation Gala.
If you live close enough to jump on the train or drive into the city, please consider joining me that evening to help raise money for DIPG research. Come stand with me as Dr. Mark Souweidane receives more money to continue researching and fine-tuning the innovative and promising treatment he has begun…
the same one that made our Caitlin a pioneer.
I imagine a day in the future, when a parent receives the news that their child has been diagnosed with DIPG. Instead of experiencing the devastation and terror we faced on that cold gray day, these future parents will be able to say,” But there’s a cure for that!” And their lives and their hearts will be filled with an assuring promise of hope that their child will live and grow up and defeat this quickly growing glioma.
In my heart, in my family’s and friends’ hearts, and in each of your hearts…we will be able to hold a small piece of treasured knowledge that our (and I say that collectively), OUR Caitlin helped to make that promise become truth, and that treatment a reality.
If you are in or near NYC, please come help me continue that journey in a few weeks. Ticket information is on the website.
This is a video clip of the sweetest kiss a mother has ever gotten from their child. Caitlin was a princess, and so gracious when she came up on stage at the end of my speech last year.
I have written many entries, but none seemed worthy of posting yet.
Tonight, is different.
The last month has proven to be no less a challenge than the (almost) 9 before now, but for different reason.
The last month has seen the start of many new things. School has begun. (Some of you who reside in the North have only recently begun school, but here in the South, we have been in full swing since August 12th.) Pop Warner has started; football and cheerleading practice no less than 4 times a week, games on Saturday and make-ups PRN.
Often, I find myself thinking, “This time last year….” (You can guess the end of those sentences.)
But aside from the memories of 365 days ago, when I watched a sassy 5 year old cheer and smile, and giggle, and fight and try to live even though she was deteriorating because her tumor was taking charge, there is something else.
Life moves on.
I said that before. I am going to say it one more time.
Life moves on.
As it should!
But that brings something new to my family, to my mind, and to my heart.
Up until now, we have executed decision making and organization around a ‘survival’ type approach. Well, I say “we” but I mean “me.” My job in this world is to care for my family; organize them and prepare them for the daily tasks, chores, responsibilities and events that lay before them. Jeff and I parent together, but I ‘run’ my household and family (in most part, by choice, or demand.)
So, in almost 10 months it has been from my perspective; the view of ‘survival.’
Suddenly, without warning, my view has shifted, and my vision is blurred. No longer is ‘survival’ enough. We must function now with the ‘forever after’ part of Caitlin’s death.
Nope. No thanks. I’m going back to bed to hide under the covers. I’ll come back out…..
That isn’t true.
But I do admit, it is a bigger challenge, a larger hurdle and a more consuming task than I thought (think) I’m ready for.
It presents itself randomly and spontaneously, which I CLAIM I like, but in reality, I tend to turn from.
It shows itself when Cole climbs into our bed again, scared; and finally admits “I know I’m next. The brain tumor, the cancer is coming for me next. I don’t want to die too.” Or when he asks on a random morning to ‘go see Caitlin at the cemetery after school to say hello.’ (He hasn’t been there before or since Easter Sunday.)
It comes when Courtney, on her way to a tumbling lesson, finally trusts me enough to ask questions and ‘talk’ for the first time ever; her topic of conversation? The moments surrounding Caitlin’s death; the details, the feelings, the people, the actions, the timing.
It arrives when I scold Campbell for being so mean and speaking so horribly, and she replies with,”BUT I MISS MY YAYA! BRING HER BACK! PLEASE!!”
So, when I broke down last weekend, and admitted to some friends that I feel guilty for talking about Caitlin, thinking about Caitlin, giving gifts that remind people of Caitlin; I expected…..I’m not sure what I expected.
But what I got was this…
As I sat in the back seat of the car, my friend drove several of us home. She turned from the driver’s seat and said,”First, you have to respect it.”
This kind, compassionate, usually soft spoken friend said it sternly. (Then apologized.)
She didn’t realize what she gave me; she gave me permission.
She gave me permission to own it; to accept it; to leave it; to give it space.
After a week of trying to digest that statement, I hope I have finally found how it ‘fits.’
I thought I was working toward ‘closure.’ You know, the end of something significant; giving an event or emotion a sense of completeness or certainty; finding a conclusion or ending. It allows for a solution instead of the opposite choice: enduring ambiguity. It is completing the unclosed circle. It is finding finality. It’s finding answers or it’s learning to live without them. (If you’re a psychology/counseling major and have been reading my posts, it will come as no surprise this is a Gestalt principle.)
Broken friendships/relationships, moving to a new town or state, ending a school/job/marriage, 9-11; anything we have experienced as a whole or individually that leaves us feeling an uncertain resolution, or with questions left unanswered. These are worthy of closure.
Visually I think of the metaphor this way: I stand at the edge of the ocean. You know the place, where the sand hits the outside edge of the ocean, it is soft and wet. But the water builds and touches you briefly before receding again. It is in this moment, when you’ve dug your toes down as deeply as possible into the sand, that suddenly the water allows for reabsorption. The sand fills in the divot created by your feet, your fingers or a shovel. The indentation was there, for as long as it needed to be. Then, when the timing was perfect, the water rose, the wave washed in quietly and filled the divot;
and, brought, closure.
Respect, on the other hand, opposes that closure theory in some ways.
Respect demands space, and place, and time and worthiness.
Respect commands that it be ‘placed.’
If I respect my grief over Caitlin’s death, then it is assured a place in my life; at least for a long time, maybe indefinitely, possibly forever,
She was a part of me, after all; a part of my heart, my body, my life, my existence. She deserves that ‘forever’ place, in my heart, my mind, and my life, doesn’t she? (A note to those scientists that I love so dearly; don’t dissect this, please.)
My love, and my grief can’t be ‘closed’ as I’ve been vehemently searching for, and rapidly attempting to accomplish.
If I find a place for my grief; if I organize it, catalog it, shelf it and specifically contain it,
then I don’t have to finish it, or stop it or place it in storage…..do I?
It gives me new perspective as well as permission.
Thank you, for giving me authorization to approve a new item on my shelf of ‘unfinished….’
All my love, for the closed and the un-closed,
for the finished and unfinished,
for the done, and not yet completed,
tonight and always, with a thanks for reading and caring….d
I leave you with 2 of my favs from this time last year…
It has, admittedly, been very difficult for me the last few days. I haven’t written about it though, until I felt I was on the up-swing of that low.
When our children were small, we read books. We taught them to use a fork, even with ‘finger food,’ and we showed them it’s necessary to brush the back of your teeth too. We showed them how to look both ways before crossing the street and if their shoes were on backwards it didn’t matter because they did it ‘all by themselves.’ Those lessons we teach at young ages are about simple values, and building core beliefs; self confidence, caring for yourself, safety.
As they grow older, we educate and exemplify a new, advanced set of marked expectations and idealism. We teach them to respect adults, complete tasks, and how to play games. I confess; early on, I allowed my kids to win at Candyland and Chutes and Ladders. The wrong value? Well, I did it on the sly; I’m guilty…BUT no child wants to continue to engage in a game when an adult can out-wit, out-smart and out-play them every, single time when they’re 3 years old and just learning. (Some of you will disagree with me, and that’s okay; I’m still moving forward with my thoughts.) Eventually I tightened the reigns and expectations and held the rules more accountable and firm; the lesson then; no cheating to win.
So that catapults me to now. I’ve struggled the last 4 days; sometimes significantly. My insides have shuddered uncontrollably at times. I’ve found my shoulders wrapped around my neck in anxiety. I squeezed my own arms so tightly yesterday I thought someone had pinched me. I haven’t gone running. I haven’t slept or eaten well. It shouldn’t matter, and (again) disgusts me that it’s present, but Sunday marked 9 months since Caitlin died. Not just 9 months, but I’m pretty certain it is the first time the 11th has fallen on a Sunday too. It was painful, even though I begged it not to be.
Monday was the first day of school. Initially I thought,”This sadness is normal because Caitlin isn’t here to move to the next grade. She would have had such an air of excitement that we would have giggled just because she giggled.” As I tried to stop myself from wondering what backpack she would have chosen, or outfit she would have worn, or what teacher she would have been assigned to; I kept repeating,” You are ok; this is what you should be feeling; this is what you are allowed to feel on the first day of school.”
It was later that night as I sat by a friend at Courtney’s cheer practice that I identified out loud why I had spent hours sobbing, and why I had screamed at the sky earlier that Monday. My friend understood, because he too, has had to live through losing someone expected to be around ‘forever.’
I have been cheated.
I taught my kids, early on, with Candyland, and then Hi-Ho Cherry-O, and Hungry Hungry Hippos, and finally team sports; YOU DON”T GET TO CHEAT!
So why was I allowed to be cheated? I appreciate the sentiment that Caitlin was only ‘on loan’ from God, but seriously, every parent’s expectation is that their children will out live them. So, I got cheated. Jeff got cheated. Tim and Aimee got cheated. And Amanda, and Ginger, and Michelle…and too many others…we’ve been cheated.
So I was certain then, that I was mad because I was cheated, not just because it was the first day of school and Caitlin would have smiled and loved it. I had been ripped off; not because she was so close that I could almost smell her on a day that she would have beamed from morning until night. I was victimized , plain and simple.
I’m not sure why, or when, but 2 thoughts slammed into me at the same time.
The first was this; I feel so cheated (and maybe it’s partly justified) but JUST MAYBE I’ve been doing some cheating of my own. If that’s the case (and I believe it is), then I certainly recognize it, own it and ask that you can allow me passage through it. I’ve cheated in readily accepting so much help, and love, and support, and giving from all of you. I’ve cheated in my (extreme) tardiness in sending thank you notes, my lack of responding to kind emails and forgetting names/faces/connections at times.
So, I want to scream,”I’ve been cheated!”
But that’s what every ‘cheater’ claims…isn’t it?
My second thought? I almost didn’t write it. I wrote it, deleted it, wrote it again, asked someone else to proof read it before I would post it. I still don’t know that it flows literally, but I’m putting it down just in case it does (and because it’s honest).
Monday was a challenge for the reasons I’ve already addressed and one more.
Life goes on.
That’s the reason.
I’ve read book after book. Each time, I read that the year(s) following the first year of losing a child/loved one are hardER than the first. I always wonder why, but never seem to find an answer anywhere. I battle in my mind how ANY thing could be more difficult than a year full of ‘firsts’; first month, first Christmas/Easter/Valentine’s Day?etc, first birthday, first summer vacation, first teacher assignment and first day of school, and the dreaded first anniversary of my child’s death. How can anything possibly compare to this pain?
I found the answer Monday.
The answer is: life goes on.
For three of my children, life goes on; but for one, it has stopped. I can’t restart, jump start or remote start; it’s just permanently stopped. The rest of the world, however, keeps turning. Because life goes on.
So my thoughts? Well, the second year is hard because the firsts are finally over,
but life keeps going on,
even if it doesn’t feel right.
So forgive me for late responses, or no responses. I apologize for self-indulging in allowing myself to figure out how to ‘re-engage’ sometimes. I promise, I really am trying hard. Sometimes, I just feel like an outsider, looking in on life…trying to navigate where I fit in, and how. I feel clumsy and awkward every day, in many moments.
Thanks, for allowing me to cheat when crossing the metaphorical road, or climb the ladder when I really should be chuting the slide.
my love, tonight,
and every moment I clumsily step back into ‘life,’ d
As I was writing this tonight, a friend nearest and dearest to my heart sent some pictures I either haven’t seen or didn’t remember (which doesn’t happen often). I love them so much, (maybe because I’m usually taking them). I thought I’d share some younger “Ya-Ya” with you…
I’ve always been a fan of any Train song I’ve heard on the radio or friends ipod. One night in January though, Train jumped the track for me. Since that night, I’ve downloaded most of what they’ve ever recorded, instead of just the top 40 hits.
Early this year, on a chilly Saturday night where friends had dropped in spontaneously to visit us, children ran through the backyard and across the porch. Parents gathered on the back deck. It was enjoyably chaotic when I got a text from a friend. The ‘conversation’ went back and forth for several exchanges. I tried to push the conversation to the back burner until later.
“You have to download this song…”
“I have friends here; will have to do it later.”
“PLEASE Denise, download it now- you NEED to hear it; YOUR FRIENDS need to hear it. It’s worth the interruption, I promise.”
I downloaded the song, and forced some good girlfriends to sit quietly and listen with me.
“The dust has finally settled down, the sun is shining on these pieces that are scattered all around…”
I was a crying mess by the time this second line ended. I was tempted to turn it off…but didn’t. On rare occasions, an unexpected choice or moment has changed my perception drastically enough to make a permanent modification in my ability to cope through the seemingly impossible.
“Brick by brick, we can build it from the floor…”
brick by brick, brick by brick
I’ve let you all in on some of my vices and secrets; here’s another…
I play this song by Train no less than 5 times a day. Sometimes I’m alone; sometimes the kids are with me. Sometimes I smile; sometimes I cry. Sometimes I play it over and over and over again. Sometimes it’s so loud I think the speakers will give out; sometimes it plays quietly in the background of my thoughts.
But it always makes an impact; each and every time.
In the 9 months since I’ve said goodbye to my precious girl, I have had days that are ‘better’ and days that are pure hell.
On a better day, I don’t cry as much (it has even happened that I haven’t cried at all). On these days I find my faith to be stronger, and have less doubt. I have more patience with my children and I can maintain my focus for the majority of the day. These are the days, that people have approached me and kindly asked,” How are you?” The answers I give are sincere, even if, to my own ears I can only hear the voice of a stranger. My reply is typically,‘I’m ok. Caitlin was a special child. She obviously had a reason and a purpose to her time on Earth. She did something that was big.” (Caitlin, not me.)
I usually conclude that statement with some tears, and this final statement, that I feel so deeply and genuinely it starts all the way down to my toes before it bubbles out of my mouth. “If I believe that is true, and she had a purpose that was bigger than I can understand, and she did that job well and without pause or complaint, then I am SO BLESSED that I was able to be her mother. I was given such an incredible gift to be able to call her my daughter. I’M LUCKY!”
And on a bad day, well, it’s simple really. It is hell. My tongue usually bleeds because I bite it so hard to keep the tears controlled. I wish it would rain all day, and talk myself out of my pajamas and into clothes. And usually, the conversation I have on these days is very one-sided. Because, in the backyard, with my arms stretched out wide, fingers toward the sky, palms up in an angry and questioning position, I yell the same words each time. “ Give her back now!” When I become exhausted, I fall to my knees and sob until I can stand up again.
That’s where the bricks come in, always and without fail.
A text, a call, a letter for the scrapbook (y’all still owe me some letters….)
A smile, a quiet and perfect corner to cry, with a strong arm to pick me up.
A neighbor who stops by to introduce himself, an unprompted “I love you from the Bull,” an extra twinkle in the eyes of my children. A team who never met Caitlin, but wears rainbow compression socks in her honor. A gentle hug, a kind smile, a friend who shares a story or memory. Special tank tops to run a special race.
Those are the bricks, that will build us up, one at a time…
Sometimes those bricks come quietly, and sometimes they march themselves in loudly, as if being backed up in a beeping, rumbling dump truck and then forcefully dropped out of that truck.
This past weekend, I accumulated so many bricks in New York that I exceeded the weight limit with my luggage. (Not really, but hang with my metaphor for the moment…)
I told you about the incredible experience at the Today Show. I was stunned by the looks in the eyes of Matt Lauer and Pat Monahan (Train) when they were confronted (I hope not blind-sided) with the ‘story of Caitlin.’ (Even if they don’t remember the moment, I do.) Support from family and friends far away overwhelmed. The efforts by family and friends close by stunned.
But nothing was as momentous as the brick we received at the 5K held Saturday in Caitlin’s honor, with proceeds benefitting Dr.Mark Souweidane and Dr. Jeffrey Greenfield’s Children’s Brain Tumor Project. Courtney accepted the first ever Rainbow Award in her sister’s honor. Dr Mark was kind and generous in his definitions and explanations of Caitlin and our family.
“The sky has made it back to blue, everything that’s left is telling us the worst of it is through…”
brick by brick…I’ll keep playing the song, and we’ll keep building, one brick at a time…
all my love, d
a final thought tonight…that friend, who desperately asked me to download and listen to a song that has offered hope and strength, has some bricks of his own he’s building with this weekend…
Evan Mandeville lost his own brave fight to the same nasty brain tumor as Caitlin. He died less than 2 days after she did. Like Caitlin, he was given a big job to accomplish in too short a time. If you read back through my other blog entries, you will see that the Mandevilles and the Downings have connected through tragedy. While none of us say it out loud very often, we have become close friends while living through something that should only make us bitter, and run toward ANYone other than someone else who had to live the nightmare we have.
Tim Mandeville gave me the gift of finding that song many months ago. In return, I’d like to offer this gift back to Tim and Aimee:
This Saturday and Sunday, Tim, Aimee, and 6 of their loved ones will ride a total of 163 miles across Massachusetts to raise money for research for children’s cancer. Evan’s Crew team has raised more than $60,000 in donations. They have trained long and hard to add this brick to their wall. I am so proud of my friends. Together, they are 8 of more than 5500 participants, each willing to bike an unthinkable amount of miles to try and put an end to parents losing their children.
Please pause this weekend, if only briefly, to send good wishes, an extra prayer, or positive thoughts to Evan’s Crew as they make their way through the Pan-Mass Challenge. I’m thinking, one of them will have a good wink or two to share when they’re done.
Good luck my friends, stay safe, we’ll be thinking of you…with love and hugs
This you tube video is Dr. Mark presenting the Rainbow Award. It’s almost 7 minutes, but it is touching and he shares something I never knew…and Courtney’s acceptance of this award on her sister’s behalf is beyond touching.
Most of you know that I’m in NYC with Courtney. We arrived ridiculously late Wednesday night and have slept very little since then.
Our schedule has been self-imposed and dictated solely by me. Courtney has been a trooper.
I packed for this long weekend. I packed clothes, my flat iron (no one wants to see my hair curly now that it’s short), and my ‘toiletries’ (such a funny word.) I packed some gifts, my favorite running shoes and a new shirt. I folded running pants, gently rolled a sundress, grabbed my broken-in sandals and almost worn out capris/sweatpants. Everything fit nicely and easily into a small carry-on suitcase and a recently splurged-upon hot pink backpack.
I packed some other things as well; some extraneous ‘stuff’ I tried to leave at home but just couldn’t.
Wait-stop…close your eyes, breath, open your eyes (really?! Did you ever even close them? I know you didn’t…probably didn’t breath either, did you?) Well, I’m shifting, so try and keep up even if you didn’t follow directions ;)
This other ‘stuff’ didn’t slide into my suitcase or get tucked into a pocket of my fab new backpack.
When I was a kid, I remember seeing pictures of people who wandered from job to job. They carried their sparse belongings in nothing more than a simple bandana knotted together and stuck on the end of a stick.
I’ve been working on this entry for many days.
I ironed my bandana. I laid it down flat, careful not to curl the edges of the thin fabric.
Inside I packed some states of affection (do not be scared of that word my macho friends…)
but, that is what I’ve packed up…lots of emotions… do not run away cowards…
I’ve taken the responsiveness to a situation and placed it in a pile in the center of a brightly colored and decorative handkerchief. I’ve placed some gently; sad, anxious, angry and sorrowful. These items have required special attention with regards to placement and care. Some have incurred the additional requirement of extra padding or special positioning due to their fragility. Others have been easily and absently tossed into the pile; eagerness, excitement, joy and pride. They have settled in amid the empty room left on the large scarf.
Finally, they flex and give and compile themselves into a neat and orderly mass. Two opposite ends are tied together loosely, and then the other two ends are tied together a top the first knot.
For a week I have struggled to explain this. I have worked to give you the words to paint a picture. This picture, however, is incomplete unless you see the bandana as a final emotion: one of hope.
Together, I can take everything I feel in my heart and wrap it within the shell of ‘hope.’
My reaction should be’”Aaaaahhhhhhh.! Got it out.” I should hit ‘save,’ ‘print,’ ‘post’ and be done.
I mean, seriously? I just took every single thing I’m feeling; from head to chest and down to toes, and packaged it up in a neat little bundle.
Because, if I stick to my original visualization, there is a stick. The bandana has to be placed on to something in order to be slung across the shoulder of the wandering worker. Most typically, this is depicted as a stick or tree branch of some kind.
Well, that’s been the biggest missing piece in this entry; the branch.
Yesterday morning Courtney and I appeared in the background of the NBC’s Today Show. What you all didn’t get to see was the kindness of an executive producer who gave us a personal backstage tour. She made one of Courtney’s (and mine!) bucket list items come true. We met Matt Lauer and before holding a ‘Cheering For Caitlin’ poster on the Today Show sofa for a photo op, he asked, with tear laced lashes, who ‘Caitlin’ was.
Today we stood at the end of a stage while Pat Monahan and Train performed in concert. Pat knelt down in obvious discomfort and signed a poster with Caitlin’s picture. He paused, and offered sincere condolences after commenting on my ‘beautiful girl’ lost to brain cancer. He was being clawed at by fans to sign something, or take a picture. I never had the opportunity to tell him he went to school with a close mutual friend. I really wanted to tell him how a friend and I listen to Brick by Brick several times a day and use those words and that music as we rebuild our families after tragic and devastating loss.
As I danced and sang (the wrong?) lyrics with Courtney on television today, I got it.
It was a light-bulb-going-off-moment (and for the record I got the lyrics correct),
I know what the stick is.
Don’t run away my friends…you can call that stick any kind of faith you want; I will not and do not judge.
I have my faith; you can have whatever yours is.
Call it little green men;
or Darth Vader and Yoda;
without that stick, you’ve got nothing to hold your bandana. And it’s going to get awfully heavy, isnt it?
my love, always…to each of you, d
special thanks to all those who helped contribute to an incredible and emotional few days! help me welcome several new cheering for caitlin fans, and please,please help me tell those who don’t know yet- that I’m grateful… xoxo, d
Hi friends! After long travel and a late, late night, Courtney and I are headed into the city to the Today Show! We hope to get our poster high enough and close enough to grab the attention of a host, and talk about Caitlin and this weekends events.
Some of you have asked for specific links, or information, so here are the links:
Here is the press release about the 5K/10K this weekend in Flushing Meadows Corona Park:
My football-loving, New England Patriot-fanatic, Tom Brady-proclaiming family would love to think that title meant this post is all about their beloved, pedestal sitting quarterback.
Growing up in Bucks County, Pennsylvania as the daughter of Larry and Nancy Pflaumer meant several things. As their children, my sister, brother and I knew life to be built of the following: unconditional love, hard work, loyalty and dedication to family and friends, prayers before meals and bedtimes and church on Sundays.
If you had the opportunity to ask me when I was 12 years old I would have told you it was also wrapped in some hardship; but I was TWELVE…I had no clue…
Like others I have met along the way to adulthood, it took me becoming of a mature age to fully appreciate all that I had growing up, and all that I didn’t have too.
It should have come as no surprise, and I’m embarrassed to say it used to anger me when as a young adult, that one of the nicknames I earned was “Brady Bunch.” Admittedly, I loved the 70’s sitcom as a child, but this was not the reason for the term of endearment bestowed upon me by my peers.
It took several years, and a lot of sad stories for me to gain the knowledge and perception necessary to arrive at the enlightening comprehension of my youth. Finally, I was capable of thanking my parents for the childhood they provided for me.
And I thanked them for all that I didn’t have in my formative years. You see, there was no trauma, no heartache, no reason to warrant fear or anxiety, aside from the typical childhood/adolescent scenarios.
Currently, in my family, eyes get wide (yes, still) when someone claims to have a headache. In the grocery store 2 weeks ago one of my children found a ‘bump’ on their head, had a near panic-attack and insisted I abandon the grocery cart and rush to the ER for an MRI to confirm the brain tumor they were certain was growing. Last Friday, I was caught by a stomach flu in the middle of the night. Cole found me laying on the floor of the bathroom and ran crying to Jeff that “Mommy must be dying! Come quick to save her!” When offering to help care for a relatives elderly dog in our home, the fear set in when we informed the children that the dog ‘is a little older’ and suddenly my children are rubbing their eyes and holding their hearts for fear of the dog dying too soon in our home.
How is that fair? Why should they get cheated out of a low anxiety, low fear, childhood?
OK…I can hear you all starting to get riled up, asking me, “What about (fill in name of child)?” And you’re absolutely correct. What about children who have to live through death, divorce, abuse, poverty, violence, and more? They get cheated out of their innocence of childhood too. I’m angry and sad for these children as well.
And it can’t be brought back. It can’t be bought or sold, or traded, or tried. It can’t be acquired or relived or done over, or rewound. It is impossible to fix it, uncover it or make the outcome or the side effects much (any?) different.
THAT is the part that makes me angry. THAT is the part that makes me sad. Like other moments, it catches me off guard and I slip into a world where I struggle to find the space in my lungs to suck in enough air for one deep breath and 2 seconds to gather my thoughts and form an appropriate response to offer my children on their path of healing.
I could easily end this here. I could stop this post right there and go no further.
I’m not going to, because there is more to be said.
With the increased fear and anxieties, we have also been given much love and friendship. My children have been the recipients of gifts both boxed and wrapped,and the intangible kind as well. They have experienced the depths of sadness, and the enormity of generosity and giving. They understand, with a deeper sense, how to be a friend, how fragile life is, and why they should smile and laugh and appreciate every moment and every experience.
One of those experiences will round itself out for us as this week begins, and ends.
Very early Thursday morning, Courtney and I will travel to New York City together for a special event. The Weill Cornell Children’s Brain Tumor Project has partnered with a foundation to raise much needed funds for research. The event takes place at Flushing Meadows, in Queens, and is a 5K/10K/1-mile family walk. The event is being dedicated to Caitlin, by her Dr. Mark Souweidane. A press release was sent out this weekend. You can click here to read about it.
Dr. Mark will also be giving out an award for the first time. It is called the Rainbow Award. I bet you can guess who it was inspired by, and who the first recipient is. This is really a good read…We are so incredibly honored.
And finally, as Courtney becomes older and asks more questions, she understands with greater admiration, the lack of awareness and funding surrounding children’s brain tumors. She asked if we could make a poster and go to the set of the Today show while we’re in New York. She asked if we could talk about Caitlin and about Dr. Mark and the walk. I tried to explain the crowd, the odds of a host speaking to us, the difficulty, the summer concert series, blah, blah, blah…Then she turned and looked at me with those big green eyes, and without a bit of sass or sarcasm, she said,”So we won’t even try?”
Oh no, my dear…we will try. And, others have gotten sparked as well, and are trying to help us get close to the railing to talk with a host. So, stay tuned…you may get to see us on NBC’s Today show, with a little luck, a little favor, and a lot of trying ;)
(See another new entry below for some other ways Dr. Mark has honored Caitlin by using her to share information on Weill Cornell’s website.)
Click on this link to learn more about DIPG on Weill Cornell’s Brain and Spine Center website. Take a glance to the left. I think you’ll find a familiar link to click on to take you to ‘A Patient Story: Cheering For Caitlin’
This entry starts in a far off place; one I did not expect or anticipate.
I have written with a moderate transparency over the last 18 months. I’ve tried to be honest, without baring the worst of my pain. I’ve struggled with showing my faults and fears, after working for more than 4 decades to keep them hidden. I’ve made efforts to inform, raise awareness, express and explain, hoping that it impacted or mattered.
A long time ago, I admitted I am an introvert. Some people didn’t believe it then; some still don’t. But, I am.
If you search the dictionary for a definition, you might not arrive at the understanding I do. You may have to dig a little deeper or explore a little further. Typically, a simple definition of introvert describes a person as being shy or primarily concerned with his/her own thoughts. I may not fit these definitions. If you look beyond this, (and we could could start talking Carl Jung and Myers-Briggs, which fascinates me, but would likely bore many of you), you would quickly see that a person can have both tendencies, but ‘lean’ more one way or another.
When viewed this way, introverts are viewed as less outspoken in groups, enjoying interactions with close friends as opposed to strangers, observing situations prior to participation, and choosing an analytical path before speaking. It is also believed that introverts “recharge” by engaging in solitary activities/time.
What does it mean and who cares?
It means that while I don’t hold on to any kind of social phobia, or fear of interacting with people, I am an introvert. And THAT is where I originally intended for this entry to start…
I knew I would write this entry. I knew weeks ago it would bubble up to the surface and eventually earn a place in my heart and mind; one that was worthy of writing about.
I didn’t want it; didn’t ask for it; hate to own it; and tried to avoid it and run like hell.
It has found me anyway.
Part of (what I call my) ‘introversion’ is a hesitancy to trust. It makes me take a step back sometimes, and often my slight discomfort or tardiness in engaging is misunderstood as rude or disinterested. It also means that ‘connecting’ is a big deal for me. I rely on my family and good friends; trust completely, love without reservation, and tend to hold them a little too tight at times. When I express myself, it comes with a lot of thought first and its delivery is wrapped with emotion (not always capable of being seen when done via text/email;)
It also means that some social situations terrify me and kick my anxiety into high gear. Moments that I am unsure of my words, and my actions.
Good-byes are one of those situations.
Some good-byes fall on the easy end of the spectrum; the end of a fun day with close friends or family who live close. A simple hug and “See you tomorrow” is heartfelt, but often reflexive and typical. These good-byes don’t last longer than a few days, and are not challenging to ‘correct’ when needed. I can knock on a door if I want to see someone.
Other good-byes find a deeper challenge, accompanied by flutters of the heart, tears that line lashes, and take longer to adjust to. This week I felt it when saying good-bye to great friends after an amazing vacation reunion. Each good-bye seemed harder and harder to complete, anxiety and sadness building. I expect the same kind of good-bye to take place in another week, when we say good-bye to family that lives too far away.
There is the obvious and saddest good-bye, that takes place when a loved one dies. This good-bye is final (at least in this lifetime). It can not be corrected, changed, forgiven or altered. There are no follow-up emails or texts. There are no second chances. These are the most difficult of good-byes, without doubt.
But there is one more good-bye that falls somewhere among these rankings, depending on the situation. This is the good-bye I knew would come. This is the good-bye I knew would find a place in my written thoughts.
Today I said good-bye to a dear friend. As she embarks on the next path in her life, it takes her exactly where it should. Unfortunately, that path leads her far away, to another state, in a different region of the country. For 3 days, I have tried to hide, and run, and make excuses so I didn’t have to confront the good-bye part of our close friendship. We cried, a lot. and we hugged, a lot, and we promised to never lose the connection we’ve found.
I believe we never will.
I left her house in tears, with a heart that found itself breaking on fault lines that were too familiar and too fresh.
But I wouldn’t change a moment of the investment my heart made into our friendship, regardless of how it hurt to say good-bye and wish her Godspeed. And I won’t stop loving those I hold close. Loving is worth the risk of hurting through a good-bye.
with love to all, d
and good luck to my dear friend- I’m sending enough hugs until I see you again.
And, a final thought, with a positive feel…
shortly after saying good-bye, I went to meet another friend…she has asked me to help her, as we get ready to welcome her son to the world in a few months.
with good-byes, we also have hellos…is that the balance of life? They aren’t the same, but I don’t think they are meant to be. One isn’t intended to replace the other.
Instead, I think it teaches us one more lesson about loving big, counting blessings, and taking time to treasure those we hold so dearly…while we maintain that balance.
…for many years actually. I started Kindergarten at 5, graduated high school. I moved on to earn a Bachelor’s degree from Florida State, and a Master’s degree from UCF. I miss school some days. I always enjoyed reading, and learning and growing while I was in school.
But it is the other education in life that has given me the most growth, and the most valuable teachings. I’m quite certain it won’t surprise you to learn that Caitlin was my best (and favorite) teacher. Through her example in life, and in the days after her death, Caitlin has taught me the most valuable and irreplaceable lessons.
Here are some…
~saying goodbye to someone you love is never easy, not ever.
~‘faith’ is a word that is much easier said, than done.
~take every moment to love someone; seize every opportunity to tell someone they are important, they matter, you care, you’re thinking of them, they made a difference, you miss them, you love them…send an email, shoot off a quick text, stop by their house, pick up the phone and call.
~when someone believes in you, you are capable of conquering more than you imagined.
~friends who are near and dear to the heart are the very best kind of friend; they love unconditionally, accept you on your ‘ugly’ days, find the positive when you can’t, and hold you until you can steady yourself again.
~hug tight and squeeze hard
~crying is ok; whenever, wherever, without explanation or guilt
~run, jump, climb, smile, breath…because some can’t anymore
~show compassion; not only for those you know, but for strangers too…you don’t know what war someone else is battling, so it’s unfair to judge. try kindness first, always
~‘winks’ really do happen, when you’re ready to see them…(sometimes after you’ve cleaned, or sometimes you need your sunglasses to spot the smile), but they are there
~each of us is stronger than we know
~life is too short
~know when to be quiet and listen, know when to be loud
~say thank you
~cancer really, really sucks
~dreams are meant to be big, moments are meant to be cherished
So dream and cherish, love and laugh. If something brings you down, makes you sad or doesn’t offer you enough, let it go. Hold on to what is important, and share every chance you get.
I leave you with this final little smile…
download this song, from Wreck-It Ralph…
When Can I See You Again? by Owl City
Listen to it the whole way through…I smile, thinking of a cute, happy, healed little girl. She dances and giggles as she sings it, looking down on those she loved dearly. She twirls with her friends, wiggles her behind (because it made us laugh), and sings a little bit louder.
I still can’t listen to Daylight without changing stations or crying (ok, sobbing) the whole way through. But this song…well, it gives me a smile, even if my heart feels compelled to be a little sad.
So we all sing it loud, and dedicate one line.,
“Life is way too short to take it slow…”
to Caitlin and her roller coaster loving friend,
they would both want us to remember the lessons they taught us, and to put all that knowledge into action…
because life really is too short to be taken slowly…
reach out now, let someone know what they mean to you, and that you love them…
Maybe that math is too big; let me take you all back down a few (or maybe many) years…
It started with 8 guys. 8 young guys, willing to take out student loans, because of a drive to practice medicine.
8 guys that studied because they dreamed, 8 guys that grew up because they had to, 8 guys that graduated because that was the only option.
8 guys that married women they loved, and grew families they never dreamed could be so perfect.
8 guys, that after more than 20 years, can come together as friends, and act as if they saw each other just last weekend.
These 8 guys came together tonight. For the first time in almost a decade, all 8 guys brought all 8 families together for the beginning of a holiday weekend.
The conversation at the beach today surrounded the reservation for tonight’s dinner.
“There will be 40.” I heard more than once. “16 adults and 24 children; that’s 40.”
These are some of my favorite people, but I found myself wanting to correct them,” FORTY-ONE, WE SHOULD HAVE FORTY-ONE!!!”
I bit my lip, and held my breath; because we had already had some special moments. (Some special winks, to be exact…and really, the hang-up on the number is another one of those ridiculous hooks that just happens to catch me sometimes.)
At 5:15 tonight, all 40 people descended upon a restaurant, and hugged like yesterday didn’t exist and tomorrow wouldn’t ever come.
And 40 of us sat down and had dinner.
But we had 41 show up for dessert.
A cupcake cake, designed into a rainbow with the prettiest (and most perfect) of colors arrived with bowls of ice cream.
And so did the fireworks. We sat on the newly purchased property of good friends; across the bay from Atlantic City, casinos and lights glowing on the horizon. We sat on the dock, as 24 children ran through a backyard, blew bubbles, jumped rope, posed for pictures, complained about the wind, and begged for chips and juice boxes.
As we took pictures, (OK, as I lined up kids for pictures, and posed kids for pictures, and bribed kids for pictures…) I turned and watched as family after family began to pull T-shirts out of grocery bags. The front adored with a medical school logo, that incorporated a special gray ribbon. The back screamed “…always cheering” and the shirt was a “teardrop rainbow tie-dye pattern”….(oh, yes, just like it sounds.)
And as all 40 of us climbed a neighbor’s steps as we pulled those bright, colorful tie-dyes over our heads; we politely asked that same neighbor to snap a couple of pictures.
And it was then, and there, that 16 adults, plus 24 children equaled 41.
So if it’s a tile plaque that falls on a picture after asking a absent child for an answer;
or a praying mantis that sits on a front door all day long;
or a medicine wrapper that appears on the floor of a recently vacuumed truck;
or the number 31, showing up anywhere at ‘just the right time,’
or a gold earring found 9 months after a friend’s visit;
or a rainbow that comes with no rain;
or friendship that defies time and distance.
16 plus 24 can equal 41…
And good friends (both old and new),
will always remember, never forget, and wait with open arms,
regardless of time and distance.
with love, to ALL our friends, especially those nearest and dearest…d
I didn’t even come up with the idea for this entry.
I wasn’t sure I was going to write it.
Last week I wandered the back yard, an umbrella in one hand and my phone on camera mode in the other. The rain fell slowly but in big droplets, and they fell to the Earth in a hard and angry manner.
I finally resurfaced back inside and finished making the dinner I had abandoned when the sky turned black in my back yard with the sun shining brightly from the front yard, and the rain began to tap and ping on my back porch roof.
Once inside, I turned to Jeff and the kids and laughing said,”Its a good thing our neighbors like us, otherwise they could post some pictures of crazy-Mrs.-Downing, standing in the backyard looking for ANOTHER rainbow.”
The weather outside didn’t change as my family inhaled their dinners. I got busy with Campbell, but found my eyes still wandering to the back windows in an effort to glance at the sky in search of a colorful treasure.
“Want me to go look?”
It almost came out of the corner of the room. Jeff stood, my umbrella attached to one hand, the doorknob turning in the other.
I stared after him as he took my place in the backyard. He was outside for a long time, and when he came in it was through the front door; which means he walked through the gate and around to the front yard to continue his search for what I wanted to see.
“Nope, not tonight. Sorry…”
By itself, it is a sweet and thoughtful gesture from a husband to a wife. But I know now that it didn’t simply start that night, nor will it end there. And it’s bigger than a one-stop gesture…
The next night I got a text from a friend who was in Texas for a work trip. “Just walked past a bar and heard a guy singing’I’m tired of chasing rainbows, so tired of chasing rainbows.’”
A few text exchanges later, that same friend asked if Jeff looks for signs, the same way I chase rainbows. Interesting on a couple levels…
Early on, I was so fast to defend Jeff; why he needed to work since he was the only physician left in his practice, why I traveled alone with Caitlin most of the time because we had a business and a home and a family, why I blog and Jeff doesn’t and how I took over all writing and sharing and didn’t even ask him if he was offended, why, why, why…I wanted everyone to know…just know…that he was fighting and hurting and struggling, and loving and breaking and staying strong; just like people were seeing in me. I defended him; I defended us.
So, my first response to last week’s text was that Jeff doesn’t chase rainbows like I do.
My second and almost as immediate thought was that I had to defend that Jeff doesn’t chase rainbows.
But I didn’t defend, because I didn’t need to defend.
Instead, I explained it for what it is; I need those rainbows when they’re out there. That’s how I ‘feel’; intensely, and with all my heart and soul. So yes, I chase.
Jeff doesn’t chase, but that doesn’t mean he doesn’t believe, or he doesn’t love; he simply doesn’t chase. (Honestly, if we WERE both chasers, it could be difficult to live with each other, I think.) So, I call it a good balance.
But, the reason I never needed to to defend was the next text that lit up my phone. “You know, that you’re husband will watch you chase the rainbow.”
I started to cry; he does watch me chase rainbows. I kept these next thoughts to myself as I considered what I had just read. He does more than watch me most days; he encourages me to chase, he let’s me talk about the chase and what it means to me. Sometimes, he chases for me…
“Some people chase rainbows and some clear the path for them to chase.”
So many have helped clear that thickly wooded path for me, while my eyes have been turned upward, searching for that next rainbow.
I think it takes both kinds of people to make the world turn. I’m thankful for my husband, my son, my parents, my incredible friends and the kind hearts of those I barely know…for chopping down trees and pulling up roots, so the path could be cleared as I chase rainbows, and my daughters follow closely behind, chasing too.
no, I know,
I’ll always chase them.
I know many who chase rainbows. But, I know very, very few who chase as hard as I think I do. Caitlin’s treasured and beloved Dr. Mark (Souweidane) is one of those people. He’s chasing a rainbow too as he tirelessly continues to fight in searching to find a cure for DIPG. As a family, we continue to strongly support Dr. Souweidane. But, he has helped to build a rainbow for our family this time. On July 27th, in New York City, a 5K is being held to support research for the treatment of brain tumors. Dr. Mark has chosen to dedicate the event to our Caitlin. Weill Cornell has formed a team and the money raised by this Weill Cornell team is returned to the Weill Cornell Pediatric Brain and Spine Center to help Dr. Souweidane continue his fight. Our hearts are touched by this incredible thoughtfulness, and we are humbled by such an honor to our daughter. Courtney and I have decided to return to the city at the end of the month to participate in this event and hopefully run a few strides alongside Dr. Souweidane and his team.
(After posting this late last night, many people have asked to see the team page.You have to copy the full link to get directly to the page. I’m told that soon a press release will be attached to the Weill Cornell team page, including Caitlin’s story.)
And one more final moment to share. One of those most near and dear to me texted me this morning after reading this entry. She was a second mother to Caitlin, and loves her tremendously. After commenting on the entry she asked,”You know who the biggest paver is, right?”
"It’s Yaya! She’s paved the way for Dr. Mark and his research. He will find a cure and we will see the biggest rainbow shine in the sky. Rainbows will take on a different meaning when he gets that breakthrough and its (partly) because of our Yaya; because she was so brave."
Maybe it’s because I was so angry at the cemetery last week.
Maybe it’s because I’ve had some good days.
Maybe it’s been happening and I’ve denied it.
Maybe it’s been the hurdle I thought we had cleared.
Maybe I wanted it to be.
Maybe, I just wanted it to be so badly.
Maybe, it just is what it is, or was.
“Don’t look here for Caitlin”
I’ve caught myself saying it as a warning, as protection, and as a defense.
I’ve found myself saying it when people have turned to Campbell to seek for Caitlin. You know what I mean, right? People search Campbell, looking for a piece of Caitlin; her smile, her gentle way, her unapologetic sweetness, and forgiving selflessness.
I’ve warned against searching for Caitlin in Campbell for 2 reasons. The first is, Campbell might kick you if you get too close. (You laugh- but I’m serious. She’s a handful and a half.) The second reason for the warning is to warn you that she isn’t there. They are opposites, completely and totally. They were as close as peanut butter and jelly- once it touches the other, it is absolutely inseparable. Peanut butter always, ALWAYS sticks to the jelly.
I’ve laughed as I’ve given out my words of protection against speculating that Caitlin is in her little sister. Again, the first reason is for your own protection against Campbell- she’s got a good arm. If she decides to throw something and wants to hit you, she will. (I know, she’s aimed at my head and hit it.) But I also give those words in an effort to protect hearts. Lately, I’ve realized I’m protecting my heart as much as I’m protecting yours. Like a knight in armor, with a shield and a sword, I stand guard. I don’t want either of us disappointed when you can’t find Caitlin where you anticipate she will be. I try and preserve our hearts (all of them) from getting our hopes up that Caitlin might surface and we could catch a glimpse of her. Believe me, nothing would please me more than to catch a piece of that angel here on Earth.
A finally, those words come from a defensive place. There is only one reason for the defense in my delivery. They are solely for my youngest child. Seems a little odd after the way I’ve just described her, doesn’t it? Well, for all her impatience and short tempered ways, she is positively spirited, fiercely ambitious, unabashedly determined and lovingly full of life. I defend her against her next older sister with the best of intentions. Are you asking yourself why I would need to defend Campbell from Caitlin?
It’s a deep concept, and one that some will disagree with; but as their mother, I get the right to worry and be concerned about it.
Long before Caitlin ever got sick (I mean YEARS before Caitlin ever got sick), I described Campbell and Caitlin as “twins born at different times.” The relationship Bull and Yaya shared is only definable as that of twins. The way twins ‘feel’ for each other, ‘talk’ for one another, and connect without contact in a pattern that language cannot describe. It’s a lock between two siblings that defies all ability to explain or understand. Twins often have this kind of connection. Twins, typically, have a different “soul felt” relationship than traditional siblings have. Caitlin and Campbell shared that affinity since the day we brought Campbell home from the hospital.
After Caitlin got sick, I was almost grateful for the difference in their personality. Knowing that Caitlin would likely die, I never wanted Campbell to have to fill Caitlin’s shoes. You’re shaking your head, right? “No one would ever expect that Denise!”
But I would. It’s honest and real, I would want Campbell to fill in for Caitlin, at least a little.
So I was relieved when I could honestly say,”Nope, not here. There is no Caitlin to be found in Campbell.”
And then, well, then I saw pictures of Caitlin at Campbell’s age; they were almost identical. Campbell started to talk more and more, and grasp on to more of her personality. Her humor has taken shape. Jeff and I have stolen sideways glances at one another; our look is without words, but clearly says,” OMG, that’s just like Caitlin!”
(Don’t get too excited; I don’t think she’s going to start having empathy for the pajamas- see last year’s Father’s Day post;)….BUT….
Three days ago Campbell started to play the ‘surprise kisses’ game with me EXACTLY like Caitlin used to play it. (Campbell wasn’t yet three years old when Caitlin died.)
Then tonight, came the lightening bolt I hadn’t anticipated…
Courtney was at cheer practice, Jeff and Cole were out to get haircuts, and Campbell pulled a beanbag into the laundry/craft room and played on the ipad with loud giggles as I cleaned and folded and picked up and put away.
“This is so WIERD mama!”
For a full, complete, nano second, my world stopped. My heart stopped. In the fraction of a moment that it took me to lift my eyes and look toward my daughter, this thought ran through my head.
“It really was just a nightmare. It’s over now. Thank God it’s OVER! She really is still alive; no one says ‘weird’ like that. None of my other children call me mama. And the touch of a Southern draw when she called me that familiar name. Caitlin isn’t dead.”
I burst into tears when I made eye contact with Campbell.
That’s embarrassing for me to admit. I’m not going crazy, losing my mind, or having a hard time coping with my daughter’s death. I just couldn’t believe those words came out of anyone else’s mouth…
I took a deep breath.
It’s ok, I will allow myself to find Caitlin in Campbell. I won’t hold her to any expectations except her own. I will love Campbell for Campbell. I will treasure her strong will and unique wonder of things around her. I will cherish her love and passion for going after all life has to offer.
And I will smile when she gives me surprise kisses. My heart will leap when she calls me “Mama.” We will adore her sass, and her laugh. I will watch as she tilts her head, wraps her arms tightly around my neck, and stares at me; all the same way Caitlin used to.
Because, as an incredible friend pointed out to me tonight,
“I think you need to cherish all those traits of Caitlin you see in Campbell. There is a little bit of Yaya shining through her little sister.Only those two had a bond strong enough to allow those traits to carry over.”
She was so right.
So I will cherish those moments for all that they are,
and nothing that they aren’t.
so, you can now too.
I mistakenly came across this Chinese Proverb tonight as I was cleaning out some old magazines. I thought it was quite a coincidence, given I was in the middle of writing this…”Flowers leave a part of their fragrance in the hand that bestows them.”
so much love,d
An extra note of love and wishes as a special boy celebrates his birthday this week. He is loved so dearly. I know he will get the best seats to the most incredible fireworks display ever shown. xoxo
Sometimes, life is about a collision of perfectly timed events…
Today ended up in some of those events intersecting into thoughts that had to be shared.
Wait, I should back up and explain ‘today’ before I explain ‘tonight’,
Only a few people are aware of some of the habits I’ve fallen into. They are exactly that, a “habit,” and routine, or even ritual of sort for me. They provide me the same comfort that a child under the age of 5 years relies on; a dependable, safe, expected set of activities that occurs regularly, and becomes something that is trusted in.
Well, once summer break hits, and the kids are out of school, all bets are off; “routine” goes right out the window. Truthfully, since Caitlin was diagnosed a year and a half ago (could it really be that long, and that short ago?!) the routine in our house has been scarce, and rarely kept to.
I’ve tried; we’ve all tried. Knowing that we all are in desperate need of “routine,” “regular,” and “normal” we have purposely strived to get to a place of allowed dependency. We all need to count on something right now, even if it’s as simple as a methodical, programmed, ordered set of customary behaviors; that’s ok.
This week, I veered far from that beaten path. Without getting into detail and boring you, or explaining away something I won’t allow myself to feel guilty for, I will tell you that I ended up at the cemetery today to say hello to my angel. I was stunned at the depth of my brokeness and devastation as I climbed from my car and headed toward Caitlin’s place of rest.
Fast forward through my tears, to juggling kids to and from activities, not one but two, TWO of Campbell’s melt-downs, and evening activities and games, to a Florida rain shower during a bright sun-shiny few minutes. Of course, you know, there were rainbows. And, as is ‘routine,’ they were texted, and posted and shared and loved.
Here is where the evening takes another turn away from the norm. I texted the rainbow in my backyard to 2 far-away friends. One replied with a little bit of a challenge before exploring some definitions and ideas that had me running to my laptop. Thoughts I hadn’t looked at before; and honestly, I was a little surprised I hadn’t…
The word rainbow is a compound word. (Ok, stick with me, I have a point…)‘Rain’ is often a depressing word, containing a sad and dreary connotation. (Even if you love rain, or storms, it has a down and dark feel to it.) ‘Bow’ on the other hand, is a happier word. Merriam Webster defines bow as “something that curves,” but the words that come to mind with that definition are beautiful, even majestic; curve, arc, angle, bend, turn, loop, spiral…
Rainbows typically have my heart pulled in those same opposite, yet complimentary ends. Beautiful, yet tragic; happy, and sad; majestic, and dark. But, scientifically, it takes both ends to make a rainbow, doesn’t it?
Here’s a thought I’ve held onto for a long time. It was suggested to me before, when I struggled to gain understanding in a desperate time in our journey. It was a time when I longed for explanation and answers; when I sought to find the truth, and prayed for miracles. It was a time when I stood on the line between faith and reason, wrong and right, science and spirituality…
Rainbows are nothing more than an optical phenomenon. Science would say that trying to define the presence or absence of a rainbow is comical. Science would explain, reasonably, that a rainbow occurs when the conditions are just right; when the sun is in the correct angle to reflect off the droplets of water that are within the Earth’s surface. It is nothing more than a spectrum of light that appears in the sky and takes on the form of a multi-colored arc.
If you know me at all, you know I’m about to defy that as far and wide as I possibly can…
“Science” doesn’t allow for gut reactions, reflexive responses of the heart or soul, or the permission of the unexplainable faith.
I’m married to someone who believes in science. I’m friends with someone who is a fabulous scientist. I enjoy science. But I have a big problem with science…and it starts with all that.
And here is where it ends.
Hold on, because I’m taking this one step deeper.
At times, I’ve been told I’ve tried to hard to draw the lines and make connections; that my “winks” are nothing more than what I want to see; that when I attempt to define the chance and coincidence in my life I am trying to comfort myself. I’m okay with all of that.
But look at this and tell me it doesn’t tug a little at the un-scientific part of you…
I never looked up the name Caitlin. It didn’t matter to us what it meant, it just sounded good. Actually, I’ll tell you a secret, our 3rd child, a female, was called Campbell until she was about 81/2 months grown inside my belly. We named all our children with the same initials (a semi-tradition proudly passed down from the Pflaumer side of the family). Jeff wanted a ‘Caitlin’ desperately, but we couldn’t agree on a middle name that started with a ‘P’ that fit between Caitlin and Downing; we skipped it and went with Campbell Payton instead, a close second favorite to ‘Caitlin Blank’. Jeff came home at the (literal) 12th hour and presented Caitlin Presley and I immediately fell in love with it. But I never bothered to look it up; it sounded like music to me, so I considered it final.
Caitlin means “pure.” Again, taken out of context, “who cares?” But, stick with my thoughts tonight, and insert the meaning of pure into the world of color…
A-ha…are you there? “Pure” in this arena means “unmixed,” “authentic,” “undiluted,” “clean,” and “pure.” (The list goes on and on and on.)
Take a prism, hold it up to clean, undiluted, unmixed and authentic light. What will happen?
You don’t even have to go to the lab to perform this experiment, because you already know…
That pure light makes a rainbow when it comes through that prism,
Caitlin gave me huge gifts this past weekend, yet again. She gave me back some incredible people; friends who have reached out to me after many, many years because they learned she was sick, and later died. She gave me the gift of new friends, who I hope become ‘old’ friends someday. She gave me deep breaths, smiles and tears and comfort in a different place with some different faces.
Just a few more gifts to add to many she continues to bless me with.
A dinner with some of those friends started off with this statement,
“We want to know. We want to ask. We want to talk about it. But we don’t know your comfort level, and what you want.”
A walk in the sun, and a cold wind had this comment being offered gently,“I want to talk more about you, and less about me. But I never want to push too hard. I never know how to start or what to say. I told you I’d be here for you; but I don’t think you always believe that.”
A last minute lunch found conversation easy, even after more than a decade (or two), until,” How are you?” (Pause) “I really mean it. I really want to know. How are you?”
A first time meeting someone new had the kind woman opposite me flooded with tears before mine even started.
Each of those situations ended in hugs, and continued communication; I was so blessed by each one of those interactions.
But it got my thoughts kicked up a gear, and made me search for an explanation to similar questions that have been asked and opinions that have been expressed in the recent past.
The “story” of Caitlin and her DIPG, and eventually her death is a horror. Scarier than anything Stephen King could pen and publish.
Our grief is often times a threat to others, and completely understandable. I have said to only a few close friends,”Imagine it was (fill in their child’s name.)” Every time, that friend will say,”I CAN NOT go there.” And believe me, I wouldn’t be able to either. One friend told me that when encountered with those thoughts about their own child, a wall immediately went up, in an effort to protect the heart and all its emotion.
When I answer those questions and conversations, I honestly DO NOT have any problem talking. My hesitation and pause comes from one small corner of my heart; the reaction of the person I’m talking to.
Anyone who knows me at all knows I certainly can tell a story. My problem is knowing when to stop telling a story. I’ve been called long winded, and been told to get to the point by more than one person.
I can cry and not get embarrassed. I am usually open and free with my tears; like a bird with the ability to soar infinitely. I don’t cry when someone says Caitlin’s name, brings up Caitlin when I’m in a good place, or tells me a story or memory I didn’t know. I don’t cry as a result of someone else is crying. I cry because my daughter is dead.
The look of terror in a person’s eyes when I’ve told too many details to the story…
The sideways glances someone makes when I’ve cried too long or my make-up starts to slide down my face…
The offers that I make to others allowing access or asking for help, that have them stumbling over their words because they feel the need to apologize for not wanting to be a part of something…
Those moments when the person on the other side of me becomes uncomfortable…
miserably, unbearably, shamefully uncomfortable.
Those are the moments that are unnerving and make me want to crack into pieces. Ask me questions, I’ll tell you anything you want to know. It’s almost easier for me to know what someone would like to hear, than for me to try and guess. A friend once asked me (from behind the safety of a text) if Caitlin knew she was dying in the hours before she died. Some of you are gasping right now, thinking that friend crossed the invisible line of decency. But I have to tell you honestly; while I certainly can’t answer that question 22 times a day, it was a little relieving to have someone ask me that. I haven’t talked about that specific detail except once or twice with friends who are in and out of my house regularly. I certainly don’t tell it every time I talk about Caitlin (again, because I don’t want to see the fear on someone’s face when I would say it.) But that question was honest when asked and truthful in its quest for acknowledgment.
I also recognize many times the intensity of my pain can be frightening. It can be difficult to hear, challenging to sustain, and near impossible to respond to me sometimes. My thoughts constantly repeat themselves,”How much information does this person really want to hear right now?”
This is how I finally decided to answer a friend this weekend. I told her,”I’m not ever afraid to talk, or answer any question you want to ask. I’ll let you know if I need to stop. But you have to let me know you want to hear me, and you have to promise not to run from my tears.”
Thank you to so many of you, who face my tears, look me in the eyes and stay by my side, helping to hold my heart while continuing to love and support me and my family.
I searched and searched for something ‘someone else’ has said, to give you a different set of words to help you understand. I finally came upon this short quote from Katherine F. Donnelly, in her book Recovering from the Loss of a Child.
“Our society has perpetrated a fraud. We are led to believe that the last thing bereaved parents would want to do is talk about the death of their child. The complete reverse is true. Parents want to talk and want someone to listen. Someone who can hear the crying of their soul…”
I haven’t written. Well, that isn’t entirely true- I have written, I just haven’t posted in a while.
The reason why is this…
Some days are ok. They really are; some days I can maneuver without melting down at the site of a small girl in Hello Kitty. I can get through the day while carefully avoiding the second floor of my home (so I don’t climb back into bed), I have showered, dressed and dried my hair and put on make up and smiled when I saw others, I have enjoyed bigger parts of my day than I have before…
It sounds reaching and desperate and pitiful, right?
To me, and to those closest to me, these behaviors are nothing less than huge accomplishments. I had been on a roll of several “okay” days when last Wednesday creeped and crawled, and jumped out of the shadows and shocked me terribly. It felt like I had been running with my eyes closed, and suddenly and without warning, I hit a brick wall and fell to the ground.
What was last Wednesday?
It was a day full of so much. Jeff got an unexpected day off of work. I went out to breakfast, sent presents to school, kept reminding myself of dismissal time, went shopping, watched a friend’s son when school let out, and took Courtney to an important doctor’s appointment. Oh, and it happened to be the last day of school for my kids.
I wasn’t ready. I didn’t think it mattered, really.
Why should it?
I still don’t have all those answers. But I know about an hour before school released many summer-hungry children under the age of 11, my heart broke, and so did the dam holding back my tears and emotions. The crack in my heart trembled, and along the fault line I found fresh, new evidence of recent activity.
I cried; for a little girl who would have been so happy for completing Kindergarten, but would have been sad to leave a beloved and special teacher. I cried for the understanding that when this school year started, Caitlin was “herself.” She was active, eager and so excited for all that the next 9 months would hold for her. She was ‘here.’ We could touch her and hold her and hear her laugh and watch her smile, and hear her chatter.
She didn’t know there would only be 3 months, not 9…
So I cried for myself. And I cried for my child. And I cried when I learned that DIPG has hit too close to home, again. And then, even one more time, if you can believe it. A child that lives so close has been diagnosed with DIPG; I can see the battle her family is waging. Another small and innocent girl, diagnosed and then passed in less than 2 weeks time; again only miles from my home.
I cried…you all know I cry often, it isn’t a secret.
But this time, I cried a fresh set of tears. These tears, came with a touch of ease, and a lack of embarrassment. They were real and honest, and carried no hurried explanation from me.
I cried them because I needed to. For the first time in 6 months months, I just cried, that’s all.
And in my heart, even before the first of my tears hit my lashes, I knew they would end. How did I know? When did I figure that out?
I’m not sure…
But I do know this: I will cry, and be sad, and miss my Caitlin every day for the rest of my life.
Some days I will struggle. I will miss her terribly. On these days, I will hold on tightly when the rain makes the water rise and threaten to flood. I will secure a grasp on a sturdy structure as the wind howls louder and screams in my face. I will turn my head from the black hole that opens up in the ground at my feet, pleading with me to take a step closer.
And if I hold on tight enough, and turn my head long enough, the rain will give way to the sun, and the wind will give way to calm, and the abyss will surge back together and become stable ground again.
And, I will find, that my tears will stop. I will re-engage and find smiles and laughter.
The sadness will take a seat, if I let it, and if I believe it will.
Like a heavy weight that sits on a gym floor, that has never been picked up; the days in the first 2 parts of this month loomed with a threatening and heavy sense. We didn’t know what kind of strength we would need to lift them off the floor, to our chest, or over our heads.
With the correct combination of equipment, training, music and coaching, that weight can be pulled up off the floor with some effort. With some strain, and some ache, it can be curled to the chest. And finally, with some burning and throbbing, it can be hauled over the head in a swift, successful movement.
Muscles may scream in agony in the following few days.
But then, there is recovery. And the next time, it’s a trace easier; because it isn’t the first time anymore.
I walked into the first day of this month armed with my own set of “equipment.” I had planned, expected and organized myself. I was wrapped with love, support and strength, by friends and family.
Among the last few weeks, I have found myself, and my family, showered with many blessings. Those treasured gifts have come in many forms. Texts, phone calls, emails and cards have filled my phones and mailboxes. Gifts and flowers filled my doorstep and kitchen counter. Hugs and tugs and touches came in various forms from gentle to strong, from both little ones with tiny arms that automatically wrap around my neck, and from those who are taller than I am, with arms that automatically pull tight as if transferring strength to me. Moments have been filled with laughter and tears, with stories, memories and images, with chatter and comfortable silence.
You all have adorned gray ribbons and purple buttons. You have embraced the drab color that signifies an important show of support. Yearbooks have dedicated beautiful pages to Caitlin. My mothers brought an incredible Mother’s Day gift to my table to celebrate the day. Big tough lacrosse players have scored goals for Caitlin.
Last Thursday, I went to see a ‘yard, that had been chalked. Lawton Chiles Middle School teachers and coaches chalked (it’s just like it sounds) part of their enormous courtyard. It’s a traditional send-off to the 8th grade students. Dedicated to loved ones who have died, Caitlin was a large part of their theme this year. Rendered speechless at the site, I cried, and laughed at the colorful, artistic representation of a good luck wish to a group of students headed to high school; and a huge display of love aimed partly at my family.
Friday we started Caitlin’s birthday at her preschool. Starchild Academy generously dedicated their back courtyard to Caitlin.It was an unbelievable honor and tribute. With a gathering of friends, and a impeccable ‘Caitlin-like’ display, we cried tears filled with gratitude, love and humility at the special gift given in memory of Caitlin. We smiled, our hearts so full from the kindness and hard work put in to making the ceremony and dedication possible, and perfect. Thank you all so much.
Following the dedication, we each worked our way through the day.
And Saturday morning we woke up. Yes, we did. The world had not stopped turning. I hand’t disappeared into a cloud of dust. As I walked through the kitchen, I even smiled.
“That’s a nice sight,” said Jeff as he elbowed Courtney.
I filled with tears, while keeping that smile Here’s the explanation I gave them:
This morning, as I reflect back on yesterday and the days from the past many weeks, I’m reminded of a popular Dr. Seuss quote. For a while I’ve existed on one side of that quote, hesitant to move to the other side. Today, I feel like I’ve finally switched.
“Don’t cry because it’s over, smile because it happened.” I’m so grateful Caitlin happened.
I smiled the rest of the weekend. I found myself laughing and hugging, swinging with friends in the middle of the day until late at night, playing wiffle ball in the back yard, cuddling and watching Lion King with the kids again, rejoicing in winks given to a good friend and her family, and watching my kids play with those that have been with them since the day they were each born as they splashed and laughed and ‘accidentally’ got a cast soaked.
And this morning, I woke to my favorite part of this story.
Last night, for the first time…ever…
I had a dream about my angel. She smiled, gave me a surprise kiss to wake me up, and left quickly with a giggle and a gentle wave as she said,”See mama? I’m ok. You’re ok too.”
Sometimes, I don’t post what I write; instead of sharing, I keep it hidden… like the winner in a game of hide and seek. The difference about my game of hide and seek is that I don’t win by keeping everything tucked away; I end up losing. But I feel like I let all of you win. Well, kind of…
When I am silent, it is because I am hesitant to let you see the sad, or the bad. This month my heart holds so much of the sad and the bad….
I got a text from a friend tonight. After wallowing around in a little bit of my own self-pity, a reply text said,” Smile more. The next 7 days will come whether you smile or not.” The text went on to say my pain must certainly be unbearably hard, but if my face smiled, maybe my brain would start to believe it.
I fought back with the facts of the coming week: Saturday is the 11th- 6 months (Good God! 6 months?!) since Caitlin died in our arms, Sunday is Mother’s Day (I know…I’m getting there….) and Friday is the 17th, Caitlin would have turned 6 years old.
That’s a lot in just one week. That’s a lot, and I thought I was ready for it all to get here.
Honestly? I’m not. I’ve written several different posts since my last entry. I haven’t posted a single one of them. Each one is negative, full of self-pity and speaks of the dragons that seem to chase me, not only in the dark of night but also in the light of the day.
I am sad.
I said it. I mean it.
I am sad.
I cry, probably too much. I don’t want to go to sleep, because I have nightmares. I don’t want to run because it’s absolute torture right now (but I do it anyway because it’s ‘good for me’), and sometimes I don’t want to leave my house, but I do.
A new feeling has settled in; a feeling of being real. The past week has been as hard as the week Caitlin died. I don’t get it; I can’t explain it. I don’t know why, but I wish I could figure it out. It hurts; and it is sad.
I want to stand on my roof and look up to the heavens and scream “GIVE HER BACK! NOW!!!”
I want my daughter back. I want my children to have their sister, our parents to have their granddaughter, our community to have their Caitlin. I want her back.
But, we all know, that isn’t going to happen.
“Society” thinks this should be getting easier, that’s what the books all say.
The books also tell me this; that in the 6 months following the death of a loved one the shock begins to wear off, the second year becomes harder than the first (really? REALLY!), and that loneliness settles in.
I will do my best. I will smile when I can. I will cry when I need to. I will relish in the delight of hearing Caitlin’s name, or sitting on my back porch swing with a friend under her rainbow. I will be grateful for an unexpected letter. I will watch Love Actually (again). I will be grateful for incredible friends who never leave my side, and for those who recently arrived. I will forgive those who can’t stay because it is simply ‘too much’.
That text from a friend earlier will continue to remind me of what is most important though;
I will continue to live; when I don’t feel like I can, when I don’t feel like I want to…
I will live, and love, because that is what Caitlin taught me…I hope that is what she helped to teach to you,
That is what Courtney and Cole and Campbell continue to teach me…
To live, and to love…
with all my love tonight, and tomorrow, and all the days after…
and all my hopes that you continue to keep Caitlin’s life alive in the way you live and love your own, d
My house is quiet. Everyone is asleep. As I type, the rain storm outside begins to kick up again. I’m at the kitchen table, with only the light of the computer, and the sound of the rain on the roof, coming in through the back door.
525, 600 minutes since this time last year.
It is April 29th. Since there are only 30 days in April, that means May1st is Wednesday.
God help me…Wednesday.
I am not ready for it to be here. Admittedly, my reasons are quite selfish; they begin (and end) with that small, sweet 4 year old. She stood bravely, did what we asked of her, and endured 10+ hours of anesthesia as the first participant in a new clinical trial for a fatal pediatric brain tumor.
Remarkably….or “coincidentally”… she had this surgery on the first day of brain tumor awareness month. We all have our priorities. Which month is it? What special colored ribbon do you adorn to show your support because it has touched you in a way that is lost in words?
Ours used to be February, and the red ribbon, for heart awareness month. Given the statics on both men and women, the ‘underfunding’ the American Heart Association receives, and the history of the Pflaumer men, we have chosen to donate to this cause in the past. This past February was no different. We donated the same amount we do every year, and participated in the same events.
May is bigger than February for us now.
In two ways…
First, May will likely hold our hearts forever. May 1st- Caitlin’s surgery and all the value and importance it holds. May 11th will be 6 months since she died. (I hate that I am even capable of making that statement true about my own child.) May 17th is her birthday. Mother’s Day is in May, every year.
And, May is Brain Tumor Awareness Month.
I’m going to skip (part of) the emotional and personal parts of May and tell you this instead:
~ brain tumors are one of the deadliest forms of childhood cancer
~ there are more than 100 different types of brain tumors
~ new cases of pediatric brain tumors approximated to take place in 2013 are 4,671
~ DIPG has made no changes in cure/survival rates in more than 40 years
~ approximately 1,545 children will die from cancer this year
(per the Pediatric Brain Tumor Foundation)
It is easy to complete a google search and see the numbers of survival rates increase exponentially as funding increases for a particular disease. So, it shouldn’t be surprising or disappointing when we look at the small amount of funding for DIPG research, or pediatric brain tumor research, and see that no progress has been made in finding a cure.
“If a serial killer was running around lose, killing 250 innocent children a year, wouldn’t we spare NO expense to capture this killer? Call that serial killer “diffuse intrinsic pontine glioma” and suddenly, very few people seem to care.”
Those are not my words. I’m not certain who they belong to; they were passed anonymously from one parent to a marketing executive and back to me. But they are true; some of the truest I’ve ever heard.
May 1st is Wednesday. It’s only another day until 525,600 minutes is here, and May begins.
I have made more gray ribbons. There are some in my car, in my purse and in the craft room. Ask me, and you can have one. My gray bracelet won’t leave my wrist. I will wear gray every day in the month of May, because someone…anyone…everyone…needs to remember it is Brain Tumor Awareness month. That’s MY priority, that’s MY color ribbon…
anyone want to join me?
all my love, d
ok- I confess: I will wear gray every day in the month of May, with the exception of May 1st. On May 1st, I will wear pink and purple. They were Caitlin’s favorite colors, and I remember with a smile, the pictures that flooded my phone only one year ago as she was in surgery. Pictures of all of you in those bright colors, loved by little girls. They were amazing- you all were amazing for wearing and sharing. May 1st, I will remember my brave girl, and the courage she displayed.
May 1st, I will wear pink and purple.
And the rest of May, I will wear gray.
(in the last 2 weeks I have received 3 letters from you all. each one of those letters began with “i have no right to be sending you this….”
Do you realize, I have NO RIGHT to be asking for them? It is selfish of me. But i am continuing to ask anyway. If she touched you, or moved you, or made you look at life differently, please tell me. If she shared a smile, or a laugh, or a story, or a moment, please tell me. I am desperate to hold on to as much of her as I can. People have repeatedly come to me over the last few months with stories and impacts that I knew nothing about. Please take just a minute and tell me… please….you have every ‘right’.)
INVINCIBLE: incapable of being conquered or defeated
Invincible, I am not.
Yesterday I got a message. Actually, the accurate way to tell this tale is that I got a message in response to a message I had sent first.
My message was privately swept away by the invisible world of the internet to a mother in the Mid-west. Currently she is in NYC with her daughter. A friend of mine had commented on something this mother had posted to Facebook. I ended up seeing it, and couldn’t resist the selfish temptation to ask the only question that screamed inside my head…
“Did she have surgery with Dr. Mark? The CED clinical trial at Memorial Sloan Kettering Cancer Center?”
The mother responded quickly. It was the same. “My daughter was the first child to participate in that study” was my response back. She asked how Caitlin is doing now…
As I struggled with a sensitive, positive and supportive message to reply, my thoughts drifted back to May1, 2012; almost 1 year ago.
the first day of brain tumor awareness month…
hours and hours waiting in a strange lobby, far away from those we loved…
the words that finally came more than 12 hours later….”It went perfectly”…
pink and purple worn by anyone who knew Caitlin’s name…
I saved one of the many texts I received that day. It was from a good friend and said,”If Oviedo was an electrical grid with all the love, hope and prayers being sent and felt this morning, I know you would be able to see it from space!”
One year ago. So much can change in a YEAR.
These thoughts ran through my mind as I made beds this morning. Campbell has been sleeping in Caitlin’s bed lately. Every night, she lifts the shade to the window, finds a star and blows a kiss or two. She whispers “goodnight and I love you Yaya” and then says to me,” I’m going to sleep in Yaya’s bed tonight. So she can come see me. Yaya would share, right?” Three days ago, I washed the sheets and remade the bed. This morning, as I quickly tugged and tucked the sheets into place, I found this wedged between the mattress and the headboard. A silly little coincidence that brought me to tears in a nanosecond.
(keep reading after the picture)
One year ago. SO MUCH can change in a year.
I am in a different place than I was a year ago. A year ago I was filled with hope in finding a cure for Caitlin, despite the fears of brain surgery and the knowledge of participation and outcome measures in a Phase 1 clinical trial. This year, as May 1st approaches, I am still filled with hope; hope that we continue to move forward on our journey to healing and peace.
So far, the path has often been rocky, and uphill. The conditions have been treacherous at times, and mild in other times. Sometimes I have brought along the necessary equipment I need to travel through challenging terrain and bad weather. Sometimes, I‘m dressed for a summer day and encounter a snowstorm. Sometimes I feel like I’m climbing a mountain in stilettos.
At times, when my feet ache, or I have become too tired, I am grateful for family and friends who offer to hold my hand. When I could no longer carry the weight of my pack, or when my heart has simply been too much for me to hold, you have not watched without notice while I drag it clumsily behind me. Instead, you generously offered to carry it for me and add it to the weight of your own pack. Some of you have even carried me when the threat to ‘go back’ became overwhelming.
I am guilty of allowing too many to have carried too much of that weight for too long. It has been hard to watch someone burn out, and then be unable to walk any further with me. I shouldn’t have asked you to hold it; I was selfish and desperate in my plea for help. You were kind in being ‘there’ for me. Please know I am so sorry when I have taken advantage of you. Thank you to all of you who have done things big and small to help me move in a forward motion.
I won’t stop. I will not give up and go back. I won’t abandon the hope and belief I have in the healing process. I know some days I will be able to run during this journey. Some days I will walk. Some days I will only crawl. And some days, I may need to stop and rest until I can find the momentum to advance again. But I promise I will not concede, and I will not go backwards.
Often I do not feel strong, or graceful as I travel this road. And I know that I am not invincible along this way…
all my love, d
I am not invincible, but I have found what is. Invincible is a group of 20 unbelievable athletes who travel to Disney’s Wide World of Sports this weekend with 4 amazing coaches to represent a great gym.
One year ago. So much can CHANGE in a year.
Since May1st of last year, this team has struggled, worked, and fought their way to the top, earning a partially paid bid and the right to bypass the preliminary rounds of the Worlds Cheerleading Competition and go directly to the semi-final round. I can think of nothing more suitable to define the word ‘invincible’ than these 24 people. Good luck Double Down Athletics Senior Level 5 Invincible team. You have proven yourself worthy of being called Invincible; own that, because it’s all yours. Can’t wait to cheer for you this Sunday!! xoxo
A few weeks ago, Partin Elementary had their kindergarten show. Every year, each grade has a performance. Each year, the show titles change for all the grades…except one grade; kindergarten. Kindergarten always performs One Big Happy Family. It’s a tradition. One that certainly did not escape my family. Long before Caitlin ever got to kindergarten she knew of One Big Happy Family. She and Courtney had even chosen what dress Caitlin would wear when the musical arrived at the end of the school year; they chose the same pretty red dress Courtney had worn when she performed in her kindergarten rendition.
You can guess by the vague timeline that we did not get to watch Caitlin participate in the simple choreographed dances and hear her sing the lyrics to songs we too, had memorized long ago. But because of some special and thoughtful teachers, and excited 5 year olds, Caitlin did reside on stage with the rest of the kindergarten classes through the show. An easel held a picture of Caitlin, dressed in the red dress she and Courtney had chosen almost 2 years ago.
It was, as so many things are lately, both incredibly touching and beautiful, and heart breaking and sad.
That was the very first time I saw it. No, not One Big Happy Family; I told you it’s performed every year…it was something else.
In the weeks since then, I have found it again and again. I have found it in bold, bright, clearly visible scenarios. I have found it in the whispers of the shadows. I have found it most often, when I wasn’t looking for it.
Caitlin has taught me (another) lesson. It is one that she has taught in a subtle, quiet way. She has given it as a gift, and has done it in the same way she taught me (us) when she was alive.
She has not taken me by the hand and pulled me through this particular lesson of life. She did not thump me on the side of my head to wake me up, or scream at me to pay attention. In her own gentle, silent and unassuming nature, Caitlin has spoken loudly.
You would only have to go back a few blog entries to begin to understand the importance of a rainbow. Wait; not the importance of a rainbow, everyone understands that beauty. But if you read back you would understand why Caitlin has been allowed to adopt them as a symbol.
Rainbows are really quite scientific, though. It is a phenomenon that is both meteorological and optical. It is simply a reflection of light in water drops within the Earth’s atmosphere. This causes a spectrum of light that shows up in the sky as an arc.
Simple enough. Easy to comprehend. When the necessary components join forces, we get a rainbow. We could get further involved in the science and definitions a rainbow entails; refracted vs. reflected, dispersion, angels and index. But we’ll stop short of those, and agree that rainbows are scientifically no more exciting than fog, or hail, or lightening.
So the science is easy; water, sun and looking at the right place at the right time.
There is another dimension to a rainbow, though, that hail and lightening and fog don’t have; a spiritual component that most people don’t deny.
I have read about explanations that span the best known definitions to trivial or incidental. Most commonly, a rainbow is assumed to be a promise from God given to Noah, or a connection that joins Heaven and Earth. I have read others that attribute a rainbow as a source or sign of fertility, wealth, healing or energy through certain colored beams.
Caitlin became united with rainbow sightings quickly in the days that followed her diagnosis. As she moved further through the year, rainbows were visible frequently, even regularly. Many people turned to me to say,” I’ve seen more rainbows in the last month than I’ve seen in my entire life.” In the weeks approaching Caitlin’s death the sky was painted with a rainbow almost every day. And, well, you all know what we saw in the sky the day she left, and the days and weeks that followed…
Since then, however, rainbow sightings have dropped off, rapidly. The components ripe for making rainbows still fill the sky all at the same time, but I can’t find a rainbow. I’m fairly certain my neighbors imagine I’m a little nutty. Thinking I should be guaranteed a rainbow given the looks of the sky, I have wandered from the front yard to the back, and around to the front again. I will stand in the driveway or backyard searching the sky until I’m dizzy, but no rainbow is to be had.
Slowly, in the last few weeks, it has dawned on me, through a combination of reading the book I’m working to put together, and watching myself and others carefully as we have glided through the days, weeks, moments.
It became ultimately clearer this weekend, when I opened my eyes a little wider.
It started with a very old post here. It was from last February. It was titled ROY G BIV, and it was about rainbows, but not the traditional kind.
Today the sky had the ideal makings for a rainbow. I was outside, with friends. We searched, but didn’t see a rainbow. We held up our hands in question. HOW was it possible to have a sky like this and no rainbow? The storms blew in, with a pouring rain. One by one, our children took off from under tents to play in the downpour. Puddles turned into mini lakes quickly. Shoes and shirts were discarded. And then, a group of mothers decided the kids shouldn’t have all the fun. We slopped and slid, ran and tackled “our” children. We laughed, and giggled and squealed in absolute perfect harmony as we played in mud puddles. (I didn’t even take off that delicate rainbow scarf; because life is about living, right?) As I nearly collided with a friend, another came around and threatened to wipe us out. Suddenly, there were tears.
But not, a rainbow.
Well, not a traditional rainbow.
We haven’t seen them in the sky, but they are still there. Caitlin has been trying to get me to see the rainbows that take place regularly and daily, just like in the weeks before she died. But she has been trying to tell me I won’t find them looking up. Instead, I just need to look a little closer at my everyday.
I will find them in the mud puddles, and the sound of laughter. I can see them in the eyes of a friend who only knows how to love unconditionally. They show up in spontaneous conversations on back porch swings under Christmas lights and long group text messages that carry on over an entire weekend. Rainbows are written in the words of an 8th grader who is as beautiful on the inside as she is on the outside. Rainbows show up moments when no words are needed, and in hugs when the right words can’t be found. Rainbows are the smiles in a child or the friends that show up because you called (or sometimes, because you didn’t call; they just ‘knew’.) They are family. Rainbows can be a cheerleader’s bow,a new nickname, a song on the radio, a gentle touch, a kind word or the sharing of a vulnerability. Rainbows can be admitting, after too long, the guilt that you have carried that shouldn’t have been yours to own.
They’re here, around us, always. We just have to be willing to open our eyes and find where that metaphorical water bends the light from our own sun. There, we’ll make our own rainbows.
I stopped some friends today. I asked them to remind me of these rainbows in the moments when I can’t find my sun, and only see the rain. I get lost in that rain sometimes. I can’t always find my way back to the shining light and rainbows. I’ve asked that they help me find my way, and hold me close until I remember how to make those arcs of spectrum light.
The Friday of One Big Happy Family claimed a sky with bright light, and dark black clouds that dropped light beads of rain from the sky. Certain Caitlin would paint the sky, I sat outside the ‘cafe-torium’ and craned my head one way and then the other to find it. I couldn’t. I cried and cried, thinking maybe rainbows weren’t as real as I thought (or hoped) they were.
It took too long, but I know now I did see a rainbow that Friday. It was one of the biggest rainbows ever.
It was inside, on stage at Partin Elementary. It was in the voices and on the faces of Caitlin’s kindergarten classmates, teachers and staff. It was the perfect rainbow, made of the most perfect elements.
It was a tragedy. There is no question that the hatred behind the destruction was (and still is) as intense as a burning fire that has gotten out of control. The bombing attack at the Boston Marathon is nothing short of sad. It would be unfair and disrespectful to minimize the physical pain and the emotional anguish of those affected by this horror. I will not do that now.
I am going to try and shake it up, and maybe turn it upside down.
This post comes from a merging of many attempts to write a letter and speak about something important to me. It is a colliding of talking to a few friends, old ideas of mine that got a fresh vantage point, and (yes, I admit) some influence from social media and network television.
I wrote this letter.
The bombings that occurred at the Boston Marathon are a tragedy.
It’s that simple. One sentence, one statement; a horrific, tragic event that is often difficult to wrap our minds around in an attempt to understand. It is more difficult to explain it to the sensitive side of our hearts and souls.
In an effort to make sense of the unexplainable and incomprehensible, people reach for their comfort zones to escape, question and attempt to find an answer or rationale. Specifically, social media has become a popular and powerful method of all of the above. So it was no surprise to see Facebook light up like a Christmas tree yesterday in the aftermath of a fearful and confusing attack against unsuspecting and vulnerable people.
I recognized some of my own thoughts in the black print on my computer screen, and later in the words spoken as I watched my son’s baseball game. The sentiments echoed over and over were often,” What is this world coming to?”
I wanted to agree. I wanted to get frustrated at the world too, for letting us down. I wanted to get angry that everyone has gone bad.
But that’s just not possible.
Typically, the first bullet points on the news are those of criminal or harmful activity. We listen as the accounts of horror and terror are defined and described over and over.
But, then, there was another Facebook post that grabbed my attention. It was a quote from Fred Rogers, about looking for the helpers in a disaster situation, because there are always so many helpers. That was so true yesterday in Boston; in the moments, hours and day(s) following the undefinable.
The “world” is like that too; so many helpers.
I know, I’ve had the absolute blessing of being touched by so many of them, firsthand.
I too, suffered the unimaginable. I am living through the nightmares. I am a recipient of something that brings about so much pain and confusion; it is unable to be explained.
Our daughter was diagnosed with an incurable brain tumor in January 2012. We searched and sought. We fought back. We researched and read. We attempted FDA approved clinical trials. We traveled. We prayed. We begged. We hoped and we believed.
Caitlin died November 2012, only 10 months after receiving her diagnosis.
I am angry and confused. But it would be unfair to displace that anger toward “the world.” Because, if people could see the good in this world, they would be unable to say the “world has gone bad.”
It started in a tiny little community. A town called Oviedo, Florida.
We were a normal family. My husband worked, I took care of our home and 4 children. The kids were all involved in school and sports and activities. We were nothing extraordinary. We were nothing special. We took care of ourselves, and extended a helping hand when others were in need. But I assure you, we have not moved any mountains.
Following that day last January though, people moved mountains for us. It is impossible to explain the care and support and love that came from our tiny little community. What started with family and friends and teachers in our small town outside Orlando grew quickly and spread with rapid speed to others in the central Florida area, and then up the East coast, and finally to all 50 states and more than 30 countries. People cared.
Because most people are good.
I know, I’ve experienced it first hand.
I wish, that we could tell our story. Not to detract from the Boston tragedy, but instead, to help share the absolute good in people. We have been so blessed by the good.
I am sending it out; to the major television networks, and news media. I doubt I will get any response, but I feel as though I have to try.
And if no response comes, that’s okay.
I’m going to continue to look for the good, even when my heart wants to feel so bad.
I will celebrate something each day; because every day brings some good with it.
I will love my family. I will treasure friends who have been around for years; I will be grateful that they have not left and continue to give me strength even when I am too weak to ask for it. I will watch the blessing of a new baby being brought into this world and the beauty in my friend’s face when she talks about having a child. I will treasure and nurture new friendships and the blessings they add to my life. I will be thankful someone took a chance and reached out. I will smile at a rainbow, or the new fuzzy baby cranes that mean spring has arrived. I will cherish a daughter that struggles to be inactive regardless of the cast on her leg, and another daughter who screams when she is mad, but then asks to hold my hand so she knows I’m not upset with her anymore. I will say thank you to a husband who works hard, and finds patience when mine have run out. I will continue to stand in awe when my son shares his thoughts and feelings on a topic I didn’t even think he understood or cared about.
And when the hurt and the pain and the heartache and the anguish threaten to force me to my knees, or render me a sobbing, crumbled fool in public…
Well, I know there will be someone who will wrap their arms around me, hold me until I find my strength again, and still not let go.
Because there IS so much good in this world.
I hope someday I can give back some good to the world too. Until then, thank you for continuing to shower my family in a rainstorm of good.
When life was normal, I would have taken my beautiful, new, handmade rainbow scarf and tucked it away safely in a drawer. I would have found a place in the closet, alongside my other ‘special’ things. It would have stayed there and been brought out on special occasions, to ensure nothing bad would come of the delicate symbolic gift I treasure. I wouldn’t have dreamed of wearing it in the kitchen, or close to my children’s sticky hands.
I wear that scarf almost every day now.
It has taken me some time to write this post.
I am trying to find my way. I have spent time reading books, looking on the internet, searching my heart and my mind to find what it is we should be doing. Each book, article, website and newsletter I find repeats the same theme over and over. “You must find your new normal.” It almost became a comforting rhythm, like the way ocean waves barrel in to the beach and then silently flow back to the deep. I am looking for that place called ‘new normal.’
It sounds like a location that one would find easily if you just opened the map. You should be able to google it and come up with its coordinates, right? It should just be that easy.
I have talked about new normal. I have thought about new normal. I started back when Caitlin was still alive. It’s a phrase used often, by many, for numerous reasons. I’ve seen it used following the birth of a baby, a divorce, a vacation, a child’s vaccinations, and following the death of a loved one. I understand the concept; settling back into life following a drastic change. It sounds appropriate enough. It really is not something that should have caused me so much turmoil over the past several weeks.
When I write, I try to be sure to include the positive ways I view life, and all its fragility. Overall, I do try to maintain that positive attitude, but each day I find myself confronted with moments when the reality of a debilitating and cruel blow that has been thrown to me. Some days the sadness is like walking a large dog on a leash for the first time. The dog tugs and pulls at the leash, almost choking itself. The beloved pet’s owner, in an attempt to control the dog, pulls back on the leash, tries to command and train and teach. Sometimes, the dog ends up trying to recover by gasping for deep breaths. Sometimes, the owner is thrown off balance and pulled quickly and unexpectedly.
Some days, that’s my grief. It throws me off, challenges me when I try to get it under control, and knocks me off my feet when I am unaware. In the moments when I can’t contain the tears, or hide my pain. Like the owner who tries desperately to get their canine to heel, i search for a healing place.
When I couldn’t get ‘new normal’ to sound “right.” I began reading, and searching, and wondering. It finally dawned on me why I found it unsettling to be calling this next step new normal. It doesn’t make sense because it isn’t a beach day. The ocean doesn’t get to roll in and fade out. Instead, it’s more like a hurricane day. It’s a Cat 5, showing no mercy. When it finally moves on, the beach is not the same. It is forever changed.
Let’s define normal. Webster’s defines it as conforming to a type, standard or pattern; occurring naturally; average or common; ordinary or routine or run of the mill.
It’s probably normal to confront your child’s life.
It’s absolutely not normal to confront your child’s death.
It isn’t normal to continue to reach for 6 plates when you set the table, or panic because you only counted 3 heads and can’t remember where the 4th child is. It isn’t standard to want to tell your child’s story to every parent of every 5 year old you see in public. It is not usual to be reduced to nothing when your 10 year old changes the radio because she can’t listen to a Maroon 5 song when she knows her mother will cry, or when your 3 year old asks to hold your hand from the back seat of the car because she’s singing This Little Light of Mine and misses her sister. It’s not right to have one bed that never needs to be made because it isn’t ever slept in. It’s not common. It’s not routine. It’s not customary.
And, really, should it be?
Here is my take on new normal. I won’t go there. I am not going to find the path that leads to new normal. I will walk toward healing. I will search for the trail that takes me to a place that is gentle to my heart.
It will never feel normal to wake up without Caitlin.
It never, ever will.
My final thought on not getting to new normal? Normal begs to be taken for granted. By its own definition it is nothing more than standard, unexceptional and unremarkable. Anything that is average or usual is passed over and passed by. I had normal once before. It was when I took too much for granted. When I thought children always outlived their parents. When I thought I had a lifetime to take the time to appreciate the beauty in simple things or to find the exceptional in the everyday.
I won’t find a new normal, because I will never again allow any part of my life to be taken for granted, or go unnoticed,
because life shouldn’t be normal. Life should be extraordinary.
That’s how I’m going to live it; with happy and sad, with light and dark, with sunshine and rain, with smiles and tears.
And, with an appreciation that doesn’t ever come with ‘normal.’
That beautiful handmade, delicate treasure I wear around my neck daily has never been inside my bedroom. It hasn’t gone near the closet or a drawer, and it won’t. It hangs on a hook, close to the garage door. That way, it’s always close at hand and ready to be looped around my neck over draped over my shoulders. Only that way, does it get appreciated.
To Spank or Not Spank: Really, that's not the question...
Before you begin to read this, I want you to know this is the most honest I’ve ever been. This entry is the one feeling, the one emotion, I haven’t shared with you before.I have allowed it to stay trapped inside, safely hidden away. It is all raw. The entry is long, gets heavy when you remember it was never fleeting or superficial for me, and takes a direction I don’t often take. I ask only, that if you read on, that you don’t stop until you reach the end; because without knowing how this one ends, well, it just wouldn’t be right. If you start it, stick with it and see it through, please.
Before we had children, Jeff and I agreed not to spank as a form of discipline.
I’m not judging, criticizing, condemning or preaching; I’m simply stating our choice for our children with regards to rearing them.
My parents spanked. (They spanked some of us more than others…but it was distributed evenly when based on behaviors deserving of punishment. Of course, that would mean you’d have to come up with some crazy calculus formula to negate the error given to the obvious golden boy of the family…) Jeff’s mother and grandparents spanked too (but rarely because he was a good boy.)
Our choices today make my father cringe at the words “time out” (which, for the record, we don’t really use.) We do however, find what our kids love most, and when they misbehave or break our rules they get punished through the loss of these treasures. That is where the generations cross; parents have to punish when the need arises.
And there, is where this entry suddenly and starkly deepens. I have struggled for the last 14 months with an extremely guilty and haunting apprehension. Since the moment Caitlin was diagnosed, I have thought her diagnosis, and the prognosis that accompanied it was mine to bare responsibility for. I have kept it a secret, like a rare gem that shines brightly all alone in a dark, tightly sealed little box.
As the weeks wore on after that fate changing Friday night, the walls surrounding that guarded secret began to crumble. In the past 8 or 9 months I have ventured to tell only a very few people, when I was at my weakest moments, of my certain knowledge of what made Caitlin sick.
Even now, as I type, the tears fall quickly and without end. The shame is excruciating. And it is SO SELFISH! The selfish part is likely the other half of the reason I haven’t talked about it. It’s selfish to believe in my heart that I would be important enough to warrant God’s attention to create such punishment reigned down on me. But really, to treat His tiny, little, perfect creation with such…. well, such disregard, and so often…I think He finally had enough. So He inflicted a penalty worthy of such an offense.
I said,”Not now” one too many times. A matching bow or tights wasn’t a high priority that deserved placement in the normal morning routine. Cole wouldn’t eat, Courtney fussed about shoes, the baby needed a bottle…Caitlin wasn’t complaining, so directing my attention at her wasn’t deemed necessary.
I physically shudder to put that in print and admit it.
It continues. Cole and Courtney have practice, and Campbell is cranky, and it is August in Florida at 5pm and its 101 degrees outside, and we’re late. What do you think I did when I tried pulling everyone out of the car and Caitlin wanted us to wait so she could show me that she learned to make a capital letter C that day? It’s the same as a lower case c, only bigger. I smiled politely and tightly, and said,”Not right now.”
It’s dinnertime and Campbell is screaming, and no one will get up at the table to eat because they are ‘busy.’ Do you know what Caitlin would do? She would quietly wander through the house gently asking each family member to come to the kitchen. She would straighten and re-set the table. Then, she would sit with her hands folded in her lap, waiting, for as long as it took. She wouldn’t complain. She didn’t ask for anything.
The stories go on, and on, and on…One of my favorites is the one I told in a blog entry just before Father’s Day; if you don’t remember, go back and read it. It’s about being fair, and pajamas.
So God got tired of it, right? He probably paced back and forth, stomping the whole time. I’m certain I heard it, but mistook it for thunder during a rain storm. He finally said,”That’s it Downing! You can’t not give her attention because the other 3 seem to need more from you.” So, He decided He would dole out my punishment. Then, in the same way I take away gym time from Courtney or video games from Cole, He took Caitlin from me. And He made sure I had a lot of memories in her final 10 months. Lots of memories so the pain was raw and ripe and real, all the time, every time, for the rest of time.
Please believe me when I tell you, I loved Caitlin tremendously, like each of my children. I never neglected her in an abusive way that would warrant a call to Department of Children and Families, but she never required or demanded or needed what the other children did. It would be unfair to cast the blame on Courtney, Cole or Campbell either, because I made those choices, not her siblings. I decided who I prioritized, who got the first and best of my energy, and who got the leftovers when I was exhausted.
So there it is, the worst and baddest and most shameful secret I have. I have carried it and locked it away for over a year. I have felt so underserving of the incredible things done for my family since January 13th of last year. I brought this on myself, and then you each offered us so much…
One of those few people I admitted my guilt to was Pastor Roberts. He reached out and wrote a kind and supportive email to me, and I lashed back with telling him he didn’t have to worry about me. I understood God had given me eternity, right here…I was in hell, deserving and just with no chance at gaining access to heaven.
He sent me an email back. It offered comfort, and he requested (begged?) me to not allow this evil to take over my thoughts. That’s what evil does; it tries to destroy your faith.
His words helped that guilt and shame settle down to a simmer, and for a while it stayed there. An occasional thought, or guilty sense would bubble up, pop open quickly and dissolve back down into itself without harming much.
Over the last couple of weeks however, I have felt it heat up from a low simmer to a more progressive slow boil. I’ve read and reread that email. I’ve repeated those words to myself, trying to get it to quiet back down. I was headed into his office soon, I told myself.
Last night, at 2:30 in the morning, I sat straight up in bed and realized the heat had been turned off. Actually, the heat is off, and the sauce has gone cold.
This week marked 4 months since Caitlin died. It’s March; April is next and May after that. I’m not sure if I was dreaming about something specific or not; I can’t remember.
But I sat up in the dark, and rapidly had a vivid set of thoughts. It was black outside, and raining; but the clarity in my head didn’t know any of that.
May 11th will be 6 months since Caitlin died; its kind of a marking point, right? It’s half a year.
6 days later, Caitlin would have celebrated her birthday; another significant marking point in that it is her birthday, even MORE significant when you add in that it is the first birthday we will celebrate without her.
And the final significant detail in this story, is that Caitlin would have turned 6.
Some of you think I look a little too hard for signs, or winks, or coincidences. I have plenty of things I would like to see, and never do. I have more questions that need answered than there are grains of sand on the Florida beach. I wish and hope and pray and beg for messages or visits that don’t ever come along.
But sometimes, SOMEtimes, things happen and they look random, but they make sense of something we have wondered about or asked about or questioned. It isn’t when we demand it, or request or require it. It happens just when it’s supposed to.
Caitlin would have turned SIX on the first birthday we celebrate since she died. Her birthday falls SIX days after the SIX month anniversary of her death.
I still claim I am not superstitious. Just the same, I am not a Bible scholar. But, I am aware, very aware of the value or definition the number 666 has been given, either by Christians or Urban Legend. You can choose from among a variety of words; Antichrist, mark of the beast, six hundred threescore and six, Satan…
I believe, that I just found someone more selfish in their desire to take credit for Caitlin’s death than me; it’s that 666 guy. Once the devil came in and intruded, I believe God worked His will around it, and she was given remarkable purpose and task, even while facing that hatred of evil.
But I’m not taking ownership anymore, the devil can have the shame and the guilt I’ve carried for too long. He can take credit for it, and in turn, I will fight my way back to my faith. He may have won this round, when he stole our daughter; but ultimately he loses, because some day, SOME day, when we see her again and hold her again and play with her and love her again, he loses. And on that day, he loses forever; and we will win for the rest of eternity.
I’m still mad, and sad, and angry and confused. Some of that is still directed at God. But with a different light…
I wasn’t a great mother before Caitlin was diagnosed with a deadly brain tumor. I’m not a great mother now. But I promise I’m reaching every day to be the mother I want to be for my children. And I know, now, I know… that I’m not going to be punished for falling short of those goals when I just can’t seem to reach them.
Thanks for sticking with me tonight. I know you don’t all feel the same way, and I won’t preach to you that you should. It was something that has been locked up, painfully, for a long time. Last night it found some peace. I found some peace; and was able to let go of the shame and guilt, and maybe a little piece of the hurt.
Thank you, for caring, and for reading, and for loving me, still. All my love, d
I don’t have a baby book for my children. Not any; not even one. No baby books. Not for one child, or even one collective book for all of them. N-O-N-E
But HOW will I keep track of their ‘firsts’? you’re asking yourself right now. First time we held them, first tooth, first solid food, first steps, first day of school…. I’m going to start with the enormous digital library I have…50,000+ photos….
But it’s an interesting concept; “firsts,” isn’t it? I think, too often, we move through the ‘normal’ and ‘routine’ paying little attention to the firsts. Sometimes, firsts even become part of the routine and normal, the way a sponge just soaks up water; almost without notice.
We are beginning to take baby steps as we step out from under the umbrella I call “Shock and Numbness.” The anesthesia that has been protecting our hearts and minds is beginning to wear off. I know this, because days are getting harder than any we’ve experienced. That difficulty we wrestle, sometimes individually and sometimes together. I’d prefer a large alligator to climb up out of the lake; most days I’m certain that would be a far easier wrestling match for me to win.
We experienced many ‘firsts’ with our hearts protected in that dazed and blunted state the last 3 1/2 months. I had fooled myself into thinking the reason I handled them “so well” was because I was ready for them. As the frost that has enveloped me for almost 4 months starts to melt away, I find my senses returning to their ‘normal’ level of awareness. First Thanksgiving without Caitlin, and first Christmas; our sadness was tolerable. I thought I was ready, and that’s why we sailed through. I feel as though I’m ready for Caitlin’s first birthday without her. Well, May 17th we’ll find out if I’m primed and equipped…
My recent awakening has me encountering many other first episodes I wasn’t ready for, didn’t anticipate and leave me with more choices of emotion than satellite t.v. offers channels.
The firsts? Well, some make me sad; seeing a Hello Kitty outfit she would have loved, seeing her name etched permanently on her stone at the cemetery, speaking to a friend about their own life and realizing everyone has been dealing with all their own issues while I was locked in my own selfish anguish.
Some firsts, leave me confused or angry; when I cry uncontrollably even though I try with every ounce of strength to stop the tears because the present moment shouldn’t be about me, my daughter or my pain; but suddenly and embarrassingly, it has become that. The polar opposite can also produce the same emotions, watching a friend cry while telling a touching story about Caitlin, and my own heart breaks as I listen, but I can’t find the tears and later feel like I have to explain my own confusion and embarrassment at the situation.
Other firsts leave my heart full of pride, and happiness; when I am approached by someone who has been touched by Caitlin, even without knowing her. When those of you still struggling to write that letter you promised and didn’t think you could/should write, finally send it to me. The first time someone calls and asks if something can be done in Caitlin’s name or in honor of her. (Thank you Partin Elementary and PTA for the donations you collected at the talent show for Dr. Mark, and his fight against DIPG! Thank you for honoring her with the Terry Sparrow Award this year, and for the beautiful, angelic snow globe. It sits in a window we pass by often, and makes rainbows on the floor.)
Last week, I was terribly sad as the week threatened to transform into the weekend. I struggled with that sadness, wondering what was keeping me anchored down, when we were excited to sail through a busy, fun-filled agenda on our days off. Sunday promised a welcome and much-anticipated visit from some out of town family, and before that we got to celebrate Opening Day of Oviedo Babe Ruth Baseball on Saturday.
Opening Day of Oviedo Babe Ruth Baseball….aha, there it was.
I was stuck in a first; one that came at me, well, forgive the pun, but out of left field.
A year ago, I held Caitlin in my arms as we stood at the opening ceremonies, among hundreds of people. It was a special day. The league of over 900 participants dedicated their entire season to Caitlin. She smiled as Coach Rod lifted her up into his arms. She waved when he introduced her, and then explained her brave fight against a brain tumor with a terminal prognosis. She made her daddy so proud when she adeptly threw out the first pitch and it made it across home plate.
Then, I cried at the kindness and generosity shown by an incredible community of people.
This past Friday, as I cried the tears I didn’t want to be seen on Saturday, a call from a friend. He asked if he could “just say a few words about Caitlin on Saturday at the opening ceremonies.”
He called it a few words, but to my sad and aware heart, it was a token of comfort that she was not forgotten. My pain eased. “No big deal, or anything like that,” he ended the conversation.
The “not big deal” turned into something I still haven’t found words for. Jeff and Cole were on the field with their team, lined up among all the baseball and softball teams. The girls and I melted into the crowd of hundreds. We braced against the cold and wind as we listened to Coach Rod again this year. Feeling like fragile glass, I heard very few of his words, as I waited for my composure to give out and find myself shattered among the bleachers, because I couldn’t hold myself together any longer as I thought about the year before.
Then, I was following unforeseen directives as the girls and I walked onto the field and joined Cole and Jeff next to Coach Rod. Still expecting “just a few words” I held Campbell tightly and joined hands with Jeff as we put our arms around Cole and Courtney who stood between us. I could feel Caitlin’s absence, until…
Coach Rod spoke, and had this brought out.
“Just a few words,”
and a brick, with the most touching message I’ve ever read, to be placed in the sidewalk of the Oviedo Sports Complex; forever a remembrance of our daughter.
The presentation ended, as a rainbow of balloons floated up into the air. A surprise made possible (and kept VERY secret) by incredible friends.
Some thing that was not a first; again, this year, I cried at the kindness and generosity shown by an incredible community of people.
Thank you, to those who planned it,
and thanks to those who were there and were a part of that first moment.
And thanks to each of you, for continuing to remember and share ALL the moments.
We are a complaining society. We tend to grasp the negative and exploit it verbally to anyone that we feel will listen. I’m guilty of it too often as well.
We gripe and groan to our significant others, friends and family, and children, to strangers in line with us, managers who are in charge of overseeing an establishment and sometimes to our own ears. We criticize to people who can make changes, and those who can not. We grumble that something is too small, lasts too long, is too far away, or delivered via poor customer service. Sometimes it just feels normal to engage in this behavior. Often, I think we just fall into it easily, and comfortably.
WICKED has made it’s way to Orlando with a traveling Broadway Series troupe. It is no surprise that it has made it’s way to the forefront of my mind; something I encounter daily. Commercials and reviews on television, songs on the radio, Facebook posts of people who hold tickets, and sometimes, personally laden conversations.
Last fall, I promised to take a loved one to see Wicked for her birthday. Through tears, we have decided that may be too painful and we have decided not to go. (I owe her a birthday present!) A text from my mother, “The commercials for Wicked bring tears to my eyes. When I asked Caitlin what her favorite Broadway show was I was surprised to hear her say ‘Wicked.’ She explained ‘because its about friends and friendship.’ I don’t know why I was surprised; that heart was so pure and full of love.” Finally, an email from a friend, that held an attachment; an essay written by her daughter, a teenager. Teenagers stereotypically are among the biggest ‘complainers.’ A group known to be happy among each other, but consistently argue the reasons something is wrong with adults. This teenager, however, defies that stereotype, in her everyday words, actions and this week, in her kind, genuine and heartfelt school-assigned essay. (With her permission, I will print it in my book, on the pages following this post.)
With all the chatter surrounding this astounding Broadway hit, I have been flooded with memories from taking Caitlin and Courtney to see Wicked on Broadway. A few days ago, in a moment of (stupidity?, self-torture?) I played some of the songs.
While ‘For Good’ reminds me of Caitlin, it fills my heart with something else…
People come into our lives for a reason, bringing something we must learn.And we are led to those, who help us most to grow…if we let them,And help them in return. Well, I don’t know if I believe that’s true. But I know I’m who I am today
Because I knew you…
We each have people who have changed our lives because of their friendship or interactions in our lives. When is the last time we stopped expressing our dissatisfaction long enough to tell those people what they mean to our existence? To our life? To our hearts and happiness? And I mean, REALLY tell them; not a casual thank you, or strong pat on the back, but really told them.
It sounds a little too sweet, like when my kids insist on syrup AND powered sugar on top of their pancakes or waffles. It sounds a little too pure, too altruistic; like Snow White and her unbelievable innocence.
But we don’t know what the next 525,600 minutes will bring to our lives. How will you look back and measure this next year? Daylights? Sunsets? Midnights?
Take some of those moments so dear, and celebrate friends.
It’s time. Trust your instincts. Close your eyes and leap. Defy some gravity;)
Like most little girls, Caitlin loved Valentine’s Day (and every holiday). She would have picked out a pretty little outfit, with a sparkly headband. She would have spent hours in the craft room with me, making Valentine’s for all those she adored. She would have started celebrating last night, and wouldn’t stop until some time tomorrow morning. She would have giggled in anticipation of a Valentine’s party and exchange at school. You would think today would be exceptionally hard for me…
It hasn’t been though. I wondered why I didn’t get out of bed with dread. I was curious why I haven’t cried yet. I have been puzzled at my ability to laugh genuinely and easily so far today.
I had coffee with a friend, ran an errand and came home. Dark clouds have covered the blue sky since late last night. They will be stuck in the same place all day, and most of tomorrow. They threaten to storm, with heavy rains and strong winds; perfect weather for staying inside. I had almost convinced myself the elements those clouds promised to deliver were an excellent reason to abandon going for a run.
I ran anyway.
And on my way home I had a silent chat with Caitlin. I don’t talk ‘to’ her, ever. I always talk ‘about’ her. But today, the music coming through my earbuds faded away regardless of what the volume button indicated, and I found myself lost in a one-sided conversation.
It was somewhat circular and disjointed, so I cleaned it up a little to share with you. Here, I found why I haven’t been overwhelmed with the sadness I was certain today would hold.
My sweet girl, it’s Valentine’s Day. I can picture you smiling, getting out of my car and headed into school, your arms filled with Valentine’s for everyone you would pass. I can hear your giggle as you would show me your goodies when you got home. I can feel your arms wrap tightly around my neck in bigger hugs than normal, because, after all, it’s Valentine’s Day.
But I’m not sad.
Campbell is struggling. She thinks I took you away to heaven, and blames me for not bringing you back home. She is certain I am responsible for your disappearance from our lives. I know it’s developmentally appropriate, but it still makes me sad.
Cole seems to be doing well, but sometimes without warning, he will start to cry or ask a question about you that tells me he thinks of you often, and misses you.
Courtney, too, misses you terribly and feels your absence as only a big sister can. She has a hard time letting her emotions out, and I am failing in my attempts to help her.
Daddy is sad at times too. He works hard, and comes home trying to smile for us. I can tell, though, that sometimes he would rather be alone and cry, or think of you. He doesn’t though, knowing we need him to be with us.
Grandma misses your sass, and the unique way that you could deliver that sass without being rude.
Pop misses your ongoing debate about who is a bigger knucklehead.
Nana misses your sweet hugs and kisses.
Dean, DeeDee, Holly and Jason miss you. I know, they tell me.
Your friends miss you. They sleep with treasures that remind them of you, and take them in for show and tell.
Those friends (really, they are extended family) who watched you grow from the day you were born, until the day you died, miss you. I know because I can see it in their eyes, and hear it in their voices.
Those friends and teachers and coaches and clinicians and loved ones we have met along the way miss you.
Strangers and people who have never met you, miss you.
I miss you, Caitlin. I miss you fiercely.
But today, I will not be sad. I will not cry for you. Because it is Valentine’s Day.
Today I will celebrate how much I love those right here with me.
I will celebrate my love for Campbell, Cole and Courtney.
I will celebrate my love for Daddy.
I will celebrate my love for your grandparents, aunts and uncles and cousins, and extended family.
I will celebrate my love and gratitude for our friends, both old and new, and for all the many people who have helped and cheered and prayed and supported, and loved you.
Today, sweet girl, I know your gentle heart will understand, and not be angry, as I rejoice and devote my own heart to each one of those we cherish, admire and hold so dear.
I rounded the corner as I finished my run. I thought how silly I was for having this kind of conversation. I looked in the sky to see the dark clouds moving back and forth, in and out of one another. I walked through the garage, grabbed a Powerade and headed inside with the garage door squeaking shut behind me. I passed through the kitchen, and, still unsettled with the feelings I had for having talked to my daughter when she certainly couldn’t hear, I walked out to the back porch and sat on the swing.
You won’t believe me, but as I finished my drink, I stood, shook my head and started in side. I saw this.
The sky is getting bright, the stars are burning out...
Imagine a summer day; it is warm and sunny. You are at a picnic with many friends. Adults are talking and children are laughing in the warm beams sent down to Earth by the sun. The smell of grilling food permeates the air. The picnic games begin; sack races, relay games and water balloons. Finally, the finale of all field day games begins. It is, of course, the tug of war. Two teams line up on opposite sides of a white chalk line drawn on a thick rope. Each side is certain they will be victorious, and to ensure that victory each team member digs their feet in the sand, grabs tightly to the rope and at the sound of the whistle, pulls with every bit of energy they can summon from their muscles. The rope moves slowly, being pulled in opposing directions, until finally, one team is able to move the white chalk line across the finishing mark, allowing a team to declare a win.
You are the rope.
That’s unfair, right? How could you imagine yourself being pulled and stretched in opposing directions? It was just an example, one that may not make sense, but I’m going to try and help you understand a little better…because my heart has been that rope lately.
A good friend who also recently watched a loved one die from cancer said the words I had been searching for to explain the conflict I’ve felt for a while.
She said, “Did you ever think it would be possible to laugh and cry at the exact same time?” And I knew what she didn’t say, but meant…it was TRULY laugh and TRULY cry at the exact same time.
I have to admit, I never would have thought it was possible until this past year. And, the past couple months have given her words an even clearer definition.
Given a certain circumstance, I would expect one emotion to follow another; happy then sad, joyful then angry, loving then confused. Instead, both feelings slam into each other (with full force of course) and the result is usually me holding my hands up and shrugging my shoulders, and, well, crying. (Because I have admitted before, ugly as it is, I am a ‘crier.’) These are moments when my heart wants to soar with happiness, but finds itself pulled back down quickly with a gravitational strength.
I’ll give you an example or two.
I have been concerned Campbell wouldn’t remember Caitlin. I have worried about how to help her remember without ‘pushing’ memories of Caitlin on her. So, I actually backed off and tried not to initiate those conversations with Campbell. So, you can guess the elation I felt the first time Campbell climbed in my lap, wrapped a tiny arm around me and said,” Mommy, Yaya is still for heaven, right?” I nodded, she continued. “And you can’t go get her and bring her home?” I shook my head, she continued. “And it’s not my turn for heaven yet, right?” I nodded again, biting my lip so I didn’t cry. She concluded with telling me how much she missed her Yaya. I was so thrilled and happy that Campbell remembered her sister on her own. And at exactly the same moment I was so sad that my baby misses her sister, that she won’t get to grow up making more memories with her.
I have watched in awe, as friendships have been formed, among children and adults. I have watched as families and friends have been recharged or brought back from a seemingly lost place. The connection, many times can be seen in a reason that connects Caitlin. My heart swells with pride for the gifts she left behind, and also with an ache that she wasn’t here to see them or appreciate them.
I find myself lost in gratitude and amazement at the incredible community and the kind and generous actions of so many people ‘Cheering for Caitlin’. But sometimes, if I’m not paying attention, I discover an anger that has set in around me; anger that we have all had to hurt so much in the process, and that Jeff and I have had to manipulate through a dense forest, answering questions, making decisions, explaining circumstances, and coping with something parents are not built for, and shouldn’t have to endure.
I listened to a song carefully in the car the other day. Usually, when it comes on the radio my car is filled with conversation and requests from my 3 active, busy little Downings. After a text from a loved one, I actually listened to the words. I found my heart stretched once more, in such polar extremes I was shocked at all the emotion it was filled with. Maroon 5-Daylight; a song that could have been written and sung by Caitlin in the dark hours of night before November 11, 2012. I cry with anguish when I hear the lyrics because they so clearly describe the night before Caitlin died. She uncharacteristically held onto me that night. She would wake up for no reason, touch my face, hold my hand tighter, or wipe away a tear. She was so quiet and peaceful, and smiled slightly with a knowledge I didn’t comprehend. While I want to allow myself to plunge into the anguish, I find myself smiling happily as I remember those exact same moments.
I wonder, how it is possible that a heart that has been so shattered is now able to love so much more?
Have I self-indulged enough yet?
I have one final example for you. I’m even going to give you a visual, and I challenge you to tell me you don’t feel the tug of war in your own heart.
I saw this today with a friend. It goes the entire way around the sun. Look closely to the left, there is an extra, little, almost fluorescent piece of a rainbow. I think (selfishly), it’s a window, maybe into heaven…where a tiny little angel could wave her “hello”, on this beautiful, bright day…
Feel the tug? See what I mean? with love, always…
there is more to part of this story…some incredible ‘coincidences’ that came in a rapid succession…but I’ve already written them into my book….so I won’t share them here right now;)
It was a shiny, blue Highlander that caught my eye
I saw a Cheering for Caitlin magnet on the back of a new, blue, Highlander yesterday as I drove home. I followed it; around corners, at stoplights, past stores, and through Oviedo. The car continued down the road as I turned right into my subdivision. I don’t think I know the person driving the car.
I bought a planner today.
“It’s about time” right? I mean, after all, the New Year started more than 2 weeks ago. And if you ask Jeff, what do I need a planner for? I have made the ridiculously difficult change from a paper and pencil planner to the virtual world of organizing and keeping track of appointments, practices, schedules and dates on my computer and phone. (Don’t tell Jeff, but it IS easier than paper and pencil.) So I gave up that other method long ago.
Why buy a planner then? Well, to keep track of the upcoming year. I did it last year, and decided, after internal debate to do the same thing this year.
Except my year didn’t start on January 1st, it started on the 13th, with a preview on the 8th.
I’m stuck; solidified in concrete. I am remembering last year. I remember the dates, and their significance, both the good and the bad. I told you we don’t do that, remember the bad dates. We have always chosen to celebrate the ‘good dates.’ Well, this past weekend, a friend gave me permission to remember, and I have to admit it felt good.
Last year, on Sunday January 8, 2012, Caitlin’s eyes crossed. I saw it, twice. I remember the concern. I remember each day as it passed; symptoms increasing, functioning deteriorating, and my own emotions escalating from concern to worry, and then panic, and finally the intense fear. I remember the moment I ‘knew’ it was bad news. I remember the seconds it took for us to hear the confirmation of the news that began our ‘new year.’
Back then, I got a planner. I wrote it all down. Every meal, every gift, every moment that I wanted to remember, every detail I couldn’t risk forgetting, every ‘coincidental’ occurrence, every story someone told me. That planner has no more space left to write.
I wasn’t going to do it this year. I changed my mind. Why?
Well, first, we made it through the week of January 8th. I remembered, and I cried. But we made it through, one moment at a time. And when we got to the 13th we marked the day by participating in the Color Run with 13,000 other people in Orlando. We ran through the city. We ran through color. We ended the race a human painted rainbow. No better way to observe the day. (The week was actually filled with those random coincidental happenings we have come to define as ‘winks.’ Rounding itself out with a quiet cake and ice cream and singing of the Happy Birthday chorus for Campbell on the 14th; the day after her birthday.)
And the other reason I bought the planner is because of the Highlander with the magnet. Because really, it isn’t just the magnet, but what that magnet represents in a blazing way to me…
It is the tough football player who finds room for a 5 year old girl’s picture amid his awards and trophies and medals…
It is the friend who silently holds me when my sobbing threatens to never end…
It is the group of high school students who want to plant a tree…
It is the sharing of Caitlin memories over coffee and tea, when I’m not even present…
It is rainbow bears, big smiles and bigger hugs…
It is gentle words, quiet embraces, unexpected texts, kind emails, and phone calls when I’m guaranteed to be a crying mess.
It is reaching out, to me, and one another. It is family and friends, and acquaintances and strangers.
Yesterday I spent the day surrounded by piles and baskets and boxes, filled and composed of mail, bills, letters, pictures, receipts, paperwork. It also held little treasures and other things I have been avoiding for months, on purpose. It was things I didn’t know what to do with, didn’t have the strength to read or look at. Yesterday I did, for hours. And, I cried and I yelled. I am sad, and I am mad. I don’t want to have to put away the consents for the clinical trials. I don’t want to figure out what to do with the Hello Kitty purse mirror I bought at a Sephora store in NYC because Caitlin fell in love with it. I don’t want to have to call the insurance company again to tell them a bill(s) isn’t resolved. (And here is the selfish anger: why do I have to keep fighting insurance bills when I didn’t get to keep my daughter…)
But I did all that, and I got a planner…
So I can continue to write it all down; not the kids practices and games and competitions, not the dentist and doctor appointments, not the schedules and the parties…
So I can write down the special things; the moments that give us strength, and joy, and winks. So I can remember every detail of every story, and the love and support that still surround us…
So I can write down I saw a new blue Highlander with a Cheering For Caitlin magnet on the back…
All my love, and thanks; for caring and supporting us while you deal with all your own lives give you too, d
PS- I have a confession. I have also been going through the letters you have written to me for Caitlin’s scrapbook, like I had asked you to. It has taken me time, to read all the incredible thoughts and amazing words. Almost every letter starts off saying,”I don’t know what to say…”
And every ONE of the letters I have received and read has touched me, so much.
And they are helping me, to heal. I predict they will continue to help me heal for a long time to come. And as Jeff, and Courtney, Cole and Campbell read them they will find healing in them. Thank you for taking the time to write them and send them to me.
(If you haven’t sent it yet, you still can! It’s not too late;)
I received this from a fellow DIPG parent, who thought maybe I could relate. It is among many beautiful poems and writings I have been blessed to have had sent to me. But this one, well, I could actually hear Caitlin saying it, especially the ending. By the way, I am fine….;)
Ask My Mom How She Is
My Mom, she tells a lot of lies, She never did before But from now until she dies, She’ll tell a whole lot more. Ask my Mom how she is And because she can’t explain, She will tell a little lie because she can’t describe the pain.
Ask my Mom how she is, She’ll say”I’m alright.” If that’s the truth, then tell me, why does she cry each night ? Ask my Mom how she is She seems to cope so well, She didn’t have a choice you see, Nor the strength to yell.
Ask my Mom how she is, "I’m fine, I’m well, I’m coping." For God’s sake Mom, just tell the truth, Just say your heart is broken She’ll love me all her life I loved her all of mine. But if you ask her how she is, She’ll lie and say she’s fine.
I am here in Heaven I cannot hug from here. If she lies to you don’t listen Hug her and hold her near.
On the day we meet again, We’ll smile and I’ll be bold. I’ll say, "You’re lucky to get in here, Mom, With all the lies you told!”
It is a phrase used often. It’s meaning is self explanatory: when you’re doing something, give it everything you’ve got, or don’t bother….
It has been noted as one of my best qualities. People have said it is one of my shining characteristics. Family has told me it’s what they love about me, and others close to me have said it is something that makes me sparkle.
But, it has also been noted as my biggest downfall, my worst flaw, my largest obstacle and what annoys people most about me.
It is my passion. It is the drive and intensity that accompanies anything I set my sights on and decide to go after. It keeps me awake at night and has even had me described as “relentless” at times.
It is not being stubborn or argumentative or unwilling to compromise, it’s different than that. But it has the same strength.
I had that passion when I was in school, and when I worked with children and their families. I have it when I run, or decorate, or create, or organize or manage.
I also have it in my relationships; when I care, or comfort, or support, or engage or love.
I can be an intense person to have as a daughter, wife, sister, friend, or, yes, probably my most intense relationship…the one I find the most passion for, is that of a mother.
I love my children, big. The same intense force that blows the rest of my life runs deeply here as well. It’s good. And it’s bad. And it’s, well, it just IS.
I’m taking an existential leap, but I wonder if love and pain walk hand in hand. And not just for me, for everyone that loves, and that hurts.
I wonder if the more we care, and love in a relationship with someone directly correlates to our level of measurable (or unmeasurable) pain when that relationship is severed or drastically altered.
I think that the same love that would drive us to the ends of the earth for someone, actually originates from the same place as the pain when we have to say goodbye. I wonder if love is the opposite side of the barest pain, and to love someone with great passion and intensity and energy means opening your heart to a bigger ache…
So loving big, may mean hurting big some day. I know the love, and I know the pain…
I’ll take my chances, even with that knowledge.
When it comes to loving,
I’ll go big, instead of going home,
every single time.
with all that love, and passion, and intensity for each of you tonight, d
A side note tonight…
Some of you have been ‘scared’ to approach me. Some of you are scared to speak to me about Caitlin. I only know because you’ve told me this. I know you don’t want to make me cry, and I often do when you approach me, introduce yourself, and say Caitlin’s name.
But please know this…
The pain that I have from watching my daughter die often has me standing close to an edge, and the ground is starting to crack and crumble away underneath my feet. I often will not cry when I am alone, because I am terrified I won’t be able to stop. I won’t cry by myself, because I may slip into that big black hole that I can’t escape. I work hard not to cry when no one is around, because the dragon’s fire just may burn me this time.
When you say hello, and talk to me about Caitlin, I find a place that is safe, secure, and a place where I can cry and not lose my footing, or get lost in space, or burned by fire. It is a place where you keep me from the dangers of crying forever, and ever and ever.
I don’t have to cry all the time. But, when I do, please don’t be afraid that YOU may make me cry…
I am sad, I will cry, but because Caitlin died, not because you spoke to me or said her name.
Hearing her name makes me cry because I miss her, but underneath those tears is a joy that is unexplainable, you see, talking about her means you haven’t forgotten her…
and you recognize that I haven’t either.
all my love…
…and thanks to those who surround me, insulate me and love me, and allow my tears to flow without judgement or criticism or running away…
(You may want to read the entry from November 3rd before you read anymore of this one….)
I cleaned today. Well, I did the annual cleaning that takes place shortly after Christmas. It’s been on my mind for the last several days; and something I haven’t looked forward to, but I did it anyway.
And as I packed up and put away I cried. As I cleaned up the decorations and clamped the boxes shut, I cried. I cried, and I cried. It was a difficult day.
I cried because when I hauled this all out of the attic in early November, and out of the dust covered bins, and placed it upon my shelves and around my home, Caitlin was by my side; she was a part of it. She helped me pick out every decoration for our new rainbow tree in the family room. She sat outside while we decorated the front yard. She laid on her downstairs bed watching, while we strategically and loving hung her “rainbow” in lights on the back pergola.
So today, while I take it all down, my thoughts consistently repeat themselves,” Caitlin was here when I put it all up. Now, I’m taking it down, and she is gone.”
Something has begun to frustrate me; so I am certain those closest to me are tired of hearing it. Everything seems to be identified as “before Caitlin (was diagnosed/had surgery/started chemo/died)” and “after Caitlin(was diagnosed/had surgery/started chemo/died).” I’ve listened to myself speak, and I don’t know how anyone can tolerate it anymore. I hate that I am identifying my life as ‘before’ and ‘after’ Caitlin (anything). I promise I am trying to stop saying that. I promise I am trying to stop establish my life as before and after caitlin; but I find it incredibly difficult, given the impact and importance she had on my life.
Today, I worked with a ferocious mindset, to find the positive, and amid the tears, find reason to give thanks and celebrate.
It took me until the 3rd room to truly embrace what I had set out to accomplish. It wasn’t about getting Christmas “put away” or “cleaned up” today. It was about finding Caitlin, hidden among it. She shined brightly, in the ornaments on her rainbow decorated tree. I found her easily in the handmade decorations from years before. She was all around in the rainbow colored lights strung up the staircase, and around the house. She was unmistakably present when we took the star of the top of the tree, or unplugged the lighted angel in the front yard. But in the living room, I found her hiding.
She was there, as I cleaned up the remaining gifts still left to be put away. It was like she suddenly jumped up and said, “Here I am Mama. I’m hiding over here!”
Yes, there she was…
She didn’t unwrap any presents this year. She didn’t tear the paper from the packages or get excited about what Santa left for her. She didn’t watch with anticipation, like in years past, as one of us opened the gift she had taken care and time to pick out and wrap for each one of us. No, that isn’t where I found her today.
Today I found her as I remembered a text from a few days ago…
“…a gift from Caitlin…”
I didn’t write it, but I received it.
And in remembering those words, those 4 simple words, I found the gift my daughter had given me this year. She gave me a chance to renew and reinvest in friends and family I may have begun to take for granted. She gave me an opportunity to reach out to people that were casual acquaintances, or complete strangers, and she let me open my heart and my life to them easily, and gratefully. And, Caitlin gave me back loved ones I had accepted as ‘lost relationships’ or ‘in the past.’ She allowed those loved ones to return to my life and help to bring me heartfelt comfort, support and tremendous love after many years.
She left me a gift. She gave me a present.
My Christmas cookbook has been returned to the shelf, alongside all the rest of the cookbooks. My favorite everyday cookbook sits on the pretty wrought-iron stand on top of my refrigerator.
And I planted a tree in the front garden this morning…
It isn’t Martha Stewart, and it is entirely too bright…
And for once in my life, I don’t give a damn.
All my love, d
The first day of winter was yesterday. It was the solstice. A gentle and loving text from my cousin reminded me that it was the darkest day of the year; the day with the least amount of sunlight. Her text finished by saying she knew my heart was closer to this day than the bright light of Christmas that was coming so soon after this dark day.
Those words stayed on my mind all day. They provided comfort, because even though we haven’t spoken, she knew my heart and the heaviness it was feeling. I was shocked she could know those feelings and put it into perfect words for me.
I struggled, my heart engaged in a tug of war with itself. Pulling hard, from one side to another and back again; wanting to stay in the dark of the solstice day, and then wanting to move away from that darkness.
So, I have decided that if yesterday was the darkest day of the year, I have 364 days that will contain more moments of illumination. It won’t be noticeable as we progress from one day to another. The moments of brilliance will creep in gently and quietly. They will slip in when we aren’t looking, or paying a bit of attention. But, 4 months from now, I will certainly catch myself talking to a friend, and I will be shocked (like I am every year) that the kids are able to play outside longer, and bedtimes have gotten a little later, and “Wow. The days are longer and brighter.”
So I have put myself on that path; the one that opens up a little more sunshine to every day. And as I walk this road, I will be devoted to allowing that sunshine to touch my heart. I may need a new pair of sunglasses soon…..;)
A final event locked up my thoughts over the last 24 hours. This afternoon, Cole sat to watch an old Christmas favorite, The Grinch Who Stole Christmas. You know the one, Jim Carrey is the Grinch, Anthony Hopkins narrates, and Dr. Seuss’s incredible story is brought to real-life, instead of a cartoon world. You almost believe that Who-ville exists, we just haven’t visited it yet.
I watched as I cooked and cleaned and played with Campbell and Courtney. My sister came home from running errands and sat on the sofa. For the last 30 minutes of the movie, Campbell settled into my lap and we sat together to watch the end.
And then, the credits started. Faith Hill’s incredible diva voice filled the family room with Where Are You Christmas? I’ve always loved this song, but today it earned a new place in my heart and took on new meaning. I cried. Deidre cried. Campbell cried because we did, and admitted (again) that she missed her YaYa, and wanted me to go to heaven to bring her home for Christmas.
I’ve printed the lyrics, so you can see that this song, that is initiated from a sad, confused and possibly angry heart ends with acceptance. That acceptance comes from love; pure and unconditional and never ending. (But I encourage you to listen to the song, it’s so much more powerful than just reading the lyrics.)
Happy Holidays my friends. I hope all your hearts can be filled with love, and acceptance for what brings your heart pain. d
Where are you Christmas?
Why can’t I find you?
Why have you gone away? Where is the laughter
You used to bring me
Why can’t I hear music play?
My world is changing
Does that mean Christmas changes too?
Where are you Christmas
Do you remember
The one you used to know
I’m not the same one
See what the time’s done
Is that why you have let me go
Christmas is here
Christmas is here
If you care
If there is love in your heart and your mind
You will feel like Christmas all the time
I feel you Christmas
I know I’ve found you
You never fade away
The joy of Christmas
Stays here inside us
Fills each and every heart with love
Where are you Christmas
Fill your heart with love Where are you Christmas?
I am a fan of rainstorms. I like a good solid long lasting storm with lots of rain; but I’m not a fan of the wind, I’m hate it when the tornado sirens start screaming and I despise lightening. A good rain will engage all your senses and set your mind in a different mood. I love to sit on the back porch while it rains hard, causing my eyes to squint just a touch, to see all the drops that fall. There is no comparison to the sound a strong downpour makes on the roof of the same back porch, mimicking a song that is never out of tune and doesn’t ever go out of style. The rain even smells good…(maybe that comes from being raised by a man who grew up on a farm as a child), but I promise, I can smell the rain, and I like it. And, a rainstorm almost always changes the pace. You’re forced to change plans, since something is always organized to be done outside. You have to slow down, sometimes even stop. I find a good rain calming, comforting and peaceful.
A good rain storm is sometimes hard to come by in Florida. Almost every day during the summer, Florida gets a little rain. Its typically in the afternoon, and can last 20 minutes or an hour or two. It usually pops up quickly, and disappears just as fast. Those afternoon storms are accompanied by lots of thunder and tons of lightening. The thunder is often easy to tolerate; it can be heard from further away and you can anticipate and prepare for it as it moves closer. By the time it’s overhead, you are ready for it, you can hear a couple of loud booms that shake the dishes in the cabinet and the pictures on the shelves, and then it moves on as gradually as it moved in. It creeps away in a step-like fashion, until you realize you don’t hear it any longer.
Lightening, however, is an entirely different story. Lightening jumps up out of no where and scares the heck out of you. Sometimes it manages to show up without any rain, when you’re certain there couldn’t be any around. It’s a bright, bold, jagged dagger thrown from high in the sky. It’s everywhere in Florida, and its damn violent. It pops and crackles and sizzles. I’ve been close (within a few houses) when I’ve heard it touch the Earth and its frightening. It starts fires; (3 neighbors in 2 years have had significant fire damage as a result of lightening strikes.) You learn quickly about lightening when you live in Florida; at the very least, you learn to avoid it and respect it as powerful.
Today marks one month since Caitlin died. I once said I wasn’t going to mark anniversaries of sad days; today I did. I tried not to. I willed myself to forget it. As it approached I tried to lose track of the date and just move thru the week. (Impossible given the number of loved ones birthdays it surrounds.) Then, I decided I’d curl up in my bed and hide under the covers all day, after I got everyone off to work and school. None of that worked, so instead I remembered, and with lots of love, made it thru the day.
I think my grief over the past month has been just like those summer storms in Florida.
I have prepared and anticipated the thunderous part of mourning. I have made accommodations for the thunder, and with some shaking of the dishes and picture frames, I’ve made it thru. I have good family and friends near and far that have helped to insulate me from the anticipatory thunder in the last month. I am so grateful for the gentle, kind and loving arms and words that have wrapped around me, all the while trying to allow me the opportunity to preserve the thought that I was maintaining strength. Looking back, I can see where and when and how each of those people held on to me, and held me up. I have had little strength from within…instead it has been loved ones who refuse to let go….thank you.
The lightening however, has been overwhelming and at times reduces me to my knees more quickly than I ever thought possible. Just like the thunder, lightening has come in just like those summer storms, as well. Lightening strikes when I am asked “How many?” by a hostess, and before I can think, I rattle off “Six.” Lightening has struck me when, at least 6 or 8 times a day, I survey my children and panic, wondering where my last child is, before I can stop the thought and remember, “She’s gone, forever.” That is what lightening is like. It is seeing Hello Kitty anything, sour patch kids candy, an advertisement for Rise of the Guardians or Hotel Transylvania, or hearing a song from Wicked or Annie. Lightening is watching someone walk away from you because they’re too scared to talk to you. Lightening is watching your child suddenly encounter an object or moment that reminds them of their angelic sister, and become so overwhelmed with grief themselves that you are left stunned and speechless, again.
I pray, and hope that the the lightening becomes less, and the thunder becomes more as we move thru our days. I try and be realistic though, knowing that in the next 6 weeks we will celebrate Christmas and New Years, and then Cole’s birthday. The next “11th” is my birthday (ironic or a wink? I’m not sure) and finally, Campbell’s 3rd birthday falls on January 13th; a day that, given the opportunity, I would crawl into bed and not come out for 24 hours. You see, January 13th is the anniversary of the day this journey began.
Maybe, instead, by January 13th, we will have found our way to that promise that often follows violent and angry thunderstorms…..
In the last 11 months, I have been able to clearly define words and phrases that before I hadn’t truly understood.
The dictionary app on my phone defines heartbroken as “crushed with sorrow or grief.”
That’s not enough words. That definition doesn’t have enough emotion. Those words cannot possibly explain the depth absolute and sharp pain in my heart. It is heavier than crushed; it is bigger than sorrow or grief. That defintion doesn’t tell you my heart feels like a piece of fragile stemware, that has been dropped from a high shelf down onto a solid, thick piece of granite; shattered into a million pieces. And those pieces, no matter how hard you try, could never possibly all be found…some are simply gone, forever.
This heartache hasn’t settled in fully, until this past Monday. My week has been unbearable at moments, tolerable during others. The first 14 days were easy to manuver compared to days 15-20. The 2 weeks following Caitlin’s death were filled with details, errands, family and visitors. But Monday, oh yes, Monday…everyone went back to their routine. Days were filled with work, school, activites; “normal.” Except, my “normal” is no longer here. My “normal” died. For more than 10 months, I had Caitlin by my side. Some days were filled with sad and difficult medical or illness related appointments and side effects. Other days were filled with fun, happy and loving moments and memories.
And as I reflect on those memories, I realize some of the other words I am able to better understand the full meaning of now. I comprehend the definition of humbled, happy, difficult and scared. I know what the phrase “fight for your life” really explains. I know what it feels like to face down death, and what it feels like to lose that fight.
Of all these words and defintions, it is heartbroken I feel the most.
the last defintion I have been able to more clearly “get,” and feel.
The app on my phone defines love as “a warm personal attachment or deep affection.”
Well, that’s wrong too.
That doesn’t explain the way my heart has been infused to care about others, especially my family, most specifically my children. That defintion doesn’t account for enourmous passion, devotion and need that exists when I ‘love.’ That defintion doesn’t allow room for the enchantment, facination or captivation I feel deep inside my chest.
Because love, and how I love, and who I love, and why I love all makes more sense to me now. It’s bigger and deeper too, than I have ever understood it or knew it to be before.
But there is another kind of love that has been redefined for me.
By each of you, toward my daughter, and my family.
Through your gentle words, tight hugs, yummy food and caring actions you have shown what one person can do for another when moved by love. Selfish, conditional and deserving are not in your vocabulary when you define love. Your incredible love has helped to carry my family. You have shown that love does not know the word “stranger.” Your love has transcended many years and much distance between communication and friendship.
It is this love, that has insulated, warmed, protected and given strength. Thank you.
We will heal our hearts, I truly believe we will. (Because if we don’t believe it, then we can’t get to that healing place.) It will take a long time, I am certain. While we have fought for close to a year, we are only now feeling the grief of losing a dear part of our family. It is a hole that is deep and wide. We will hurt and ache when we expect it to be difficult, and when we least expect to be effected. But we work toward finding a place where our sharp and stabbing pain will dull to an ache instead. We will look around, for the shards from the glass that dropped on the granite. We will clean it up the best we can, and hope we see the missed pieces prior to stepping on them with our bare feet.
Until then, thank you, for keeping us in your hearts, and thoughts and prayers.
Campbell started taking a pacifier when she was only a few weeks old. Out of 4 children she was the only one to ever want a pacifier. I promised myself, her and everyone around us that by her 2nd birthday we were going to be rid of it. As we approached that day I began to summon my strength and dig my heels in as I prepared for what certainly would be a battle. And then, well, you all know what happened on Campbell’s 2nd birthday….it was that cold, gray, Friday…January 13th.
So, as we began an entirely different battle, I granted everyone to cling to their current coping devices. Caitlin was allowed to continue to suck her thumb and take puppy anywhere she wanted, and Campbell was permitted to keep a paci for her mouth and one for each hand. We decided eating carbs was a smart decision again. Courtney was allowed to go to the gym almost without question to tumble and Cole was given more leniency when it came to playing video games.
About half way through our journey over the last year, I decided to start running again. It had been a long time; but I needed an outlet for some challenging emotions, and the idea of going to a gym was entirely too claustrophobic a feeling. So I started running. I’m not a runner though. I know that may sound like a contradiction, but I run, I’m not a runner. The difference is this: runners are good at running, do it often and they enjoy running. I run because I need the physical release and exercise. I run because it makes me stronger physically, and that gives me strength mentally in some deformed line of thinking. Running also gives me a chance to jam my earbuds deep in my ears and turn the music up loud. (I know it isn’t good for my ears….)
It has been 2 1/2 weeks since I last went for a run. Well, that is, until last night. Last night I went for a run. It was so very UGLY. The night air was cold and wet with a faint drizzle. It was slow, like a turtle-slow. It was clumsy and awkward; I felt like I was tripping instead of running. It was painful; my ears hurt, my chest hurt, my legs hurt and my head hurt. I cried almost the whole time; and that doesn’t make for easy running either. I stopped half way thru when a good friend drove by and slowed down to say hi. And then, THEN…
I FINISHED! I finished that run.
Maybe that’s how healing from the loss of a child will be; painful, slow, clumsy and ugly. But maybe, with time, patience and a lot of love, I’ll finish…
After a shower and some cuddle time, I took Campbell to bed. I stayed with her for a while as she fell asleep. I lifted my head in the dark and was shocked as my heart took a leap. Her pacifier was glowing in the dark. I haven’t seen this paci in a long time; months actually.
It quickly reminded me of the incredible and beautiful candles and luminaries from Sunday night. It brought (good) tears to my eyes as I slowly backed out of Campbell’s bedroom. I paused in the hallway for a minute…
Maybe Campbell can hang on to that pacifier a little while longer. I like its glow.
With a lot of love, d
This morning started out sad as we let go of the last physical part of Caitlin. Today, Jeff and I met Pastor Roberts at the cemetery at St. Luke’s and placed what was left of Caitlin’s body in a quiet, peaceful and simple ceremony. It was immensely difficult to part with her, and say a final goodbye. I know it is only a “shell” and she is no longer with us, but the finality and permanency of the act again brought me to my knees. Treasure those you love, hug them tight and make sure they know…..how much they mean to you.
It isn’t finished yet. I have a feeling, it will never be “finished”…
But, I’m writing a book about it anyway, and I’ll just have to find an ending point. It will take me some time to complete what I have started. So until I can, I have another story to share with you. I did not write it.
It seems fitting, however, as we begin to prepare for the events over the next several days.
The Brave Little Soul
By John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity.”
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you; Caitlin Presley.
God and the brave little soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
It may be my own need to give Caitlin’s death purpose, but this story gives me comfort right now. In my heart I want to desperately believe it really is this beautiful a story my child was a part of.
With love, d
For anyone who is keeping track…it has rained every day this week. AND, there has been a rainbow every day this week.
There is a joke about Florida’s seasons. Florida has 2: a wet season and a dry season. The wet season runs from April-October, and the dry season runs from November-March. They are just that. It rains every day during the wet season and not at all during the dry season.
So imagine our surprise when God winked and threw us a couple rainbows and some rain in the last several days.
Sunday morning, as I woke next to Caitlin, on the make-shift bed we had relocated downstairs, I knew the day was going to be different. Although she begged for me to take her to church, I knew we would not get there and that she was failing us.
I will not weigh this post down with details and specifics, because death is not beautiful or glamorous as some have described it. I will tell you the beautiful part of this story however.
We held Caitlin in our arms, while family gathered around, and at 3:24 on Sunday afternoon Caitlin took one last breath and died.
We cried some more, and said goodbye. And then, as if God rolled out the carpet for her to travel to heaven, a rainbow appeared. That means, moments after each of her family members said goodbye it rained (for only a few minutes) AND produced a rainbow….in my heart I want to believe Caitlin took the hand of loved ones, and unafraid, she skipped up that rainbow and right into heaven with only one look back to wave and say, “It’s ok mama! I promise I’m not scared! I can skip again!”
Again, without details of the day, I will fast forward to several hours later. We let go of the shell that had once contained Caitlin’s incredible spirit. We kissed those uncharacteristeric chubby cheeks, and the no-longer crooked and droopy mouth, and we placed her body into the care of the funeral home.
As they drove away I started thru the house and out the back door to retrieve the other children from a friend’s house. As I got half way thru the backyard, the sky opened up, and it rained. I stood in the rain with a friend who was walking with me. Honestly, I think we were both paralyzed with shock. Turning our heads toward the sky in stunned silence, we put up our hands and shrugged our shoulders because words weren’t necessary. As our feet hit the back porch of our other friend’s house just a few yards away, the rain stopped.
We gathered children and sent them running thru the backyard for some dinner. Again as we reached the halfway mark in the joined backyards, it rained. It rained harder and harder until we reached the door of my back porch. It rained for 3 minutes and was done. Another wink? How can it be anything but a wink.
Then, finally, after a day of being surrounded by family and friends, and Jeff and I dealt with the tasks of funeral home and church service arrangements, we arrived home yesterday afternoon. We were greeted with a dozen excited and shouting adults and children. Apparently, while we were out “arranging”, at exactly 3:24, a rainbow, ever so faint and light, appeared in the backyard of our home.
God let Caitlin throw her own rainbow. She loved them so much. She thought they were beautiful. And in the last year, when everyone joined in and made it “hers” to own as a symbol of things so much bigger than she could ever know, she was thrilled.
So I’m going to believe, that God picked her up, and said, “Let’s send a message to mommy, daddy, and everyone left down on Earth crying for you. How could we let them know that you’re ok?” It wouldn’t take Caitlin long to reply, “Mama loves rainbows!” And with that, God held her hand, and together they threw a rainbow; a tiny, fading, almost invisible rainbow.
Rainbows and rain, during the “dry” season…..best.wink.yet.
with love from our broken hearts, d
We have made arrangements to have a celebration for Caitlin’s life.
Thursday November 15th we will have a visitation from 6-8pm.
Friday November 16th we will have a service at noon to celebrate Caitlin’s life, and all that it has meant. Following this service, we will have a reception (at the Live Oak Reserve Clubhouse). We gently (and respectfully) request that no black or navy blue be worn to her services. Caitlin was bright and loved her colors. So we ask that you choose to wear a color that our princess would have approved of.
Both events will take place at our church,
St. Luke’s Lutheran Church
2021 West State Road 426
Oviedo, Florida 32765
In our efforts to continue the battle against a horrible disease, we made preparations and donated Caitlin’s brain and spinal column to be used in Dr. Mark’s fight.
We have asked that in leiu of flowers, a donation be made to Caitlin’s treasured and beloved Dr. Mark and his continued efforts and research to find a cure for DIPG.
Checks can be made payable to: WCMC Department of Neurological Surgery
Mailed to: Dr. Mark Souweidane c/o Ms Ana Ignat
520 East 70th Street Box 99
New York, NY 10068
Dr. Mark has asked that if this is something you choose to participate in, that you please remember to note “In memory of Caitlin Downing” in the memo section of check. It is important to him, as I know that he loved our daughter too, and any donation made in Caitlin’s name is of significant meaning to him.
And finally, with fresh new tears, I ask you add a special little boy and his family to your prayers today. I have engaged with only a few families who find themselves in the same situation we have; fighting this nasty disease. One of the families that has held my heart tightly is Evan’s family (aka the CREW). It was a chance elevator meeting, that resulted in a connection made months later, and friendship formed. This morning Aimee and Tim had to say goodbye to Evan as he died. While I know their heartache and share their pain today, Aimee offered me some incredible words of comfort. You see, Evan and Caitlin are each one of many siblings. “Now Evan has a sister to hold his hand, and Caitlin has a brother, in heaven.” Aimee, I think they will play together in heaven, with each other and others who have died before them. They will finally be healed, and once again they will be able to skip and run, and jump and dance. So you know, Caitlin would have met him, held out her hand, and told him everything would be ok. He probably wouldn’t have needed the reassurance, because he was always up for an adventure, but her soothing ways would surface anyway. My love to you today, and every day from now until forever, because I know you will hurt that long too.
My words tonight are not eloquent, they are just honest
Wednesday we went to Disney. We escaped quickly from routine, and had some kind people “turn up the magic” for us. And by “turn up the magic”, I mean, we felt like we were the only people in a crowded park! It was such a beautiful day that we have declared November 7th an official Downing holiday: Disney Day. Jeff and I don’t celebrate or get caught up in the anniversary of sad days. In our hearts, we feel this isn’t the way to remember a person, or a time. So instead, we have chosen November 7th as a official day to celebrate our family, our love for our family, and ‘magic’ and memories of our children.
It is now, that I am learning the difficult game of balance. This isn’t just any balance though, this is balance in extreme ways.
Balance that includes telling an 8 and 9 year old their sister is going to heaven, and watching them crumble at moments because of the magnitude of this information and then rejoicing for silly jokes, a friend who wraps his arm around his buddy as he cries during a 3rd grade school musical because the hippos can’t crash the dance, a stuffed rose left anonymously on a grieving girl’s desk…..
Balance that includes making a phone call to hospice, inviting them into your home and signing a DNR on your 5 year old daughter. There is no greater pain up until now. And 20 minutes after hospice walks out your front door, and that same 5 year old tells you for the first time in more than a year that she is “really really mad at you!” and that’s when the doorbell rings and a friend shows up with a Christmas wreath in hand. It’s beautiful.
Then she proceeds to explain that the community Home Depot has donated an incredible amount of Christmas decorations for our yard….(I think you can now see my house from space.) and neighbors that come out of their homes to help set it all up, put it together and stake it down.
And a neighborhood that starts a movement to bring Christmas early…to put up all their lights and decorations, to make little Caitlin Downing enjoy her last few days with a smile, when they are difficult to come by lately.
Every time I fall to my knees in anguish, with an unbelievable ache in my heart, and I silently say, “how will I survive this pain?” I hear the thud from behind me, and feel the ground shake, as a community, both physical and virtual fall to their knees as well. And my gratitude for that support and love will never be expressed fully, because there simply aren’t any big enough words or actions to convey it. But it is the answer to my question…and to part of my prayers…
I will survive because of your tremendous, selfless and giving hearts.
I will survive because of your incredible and unconditional friendships.
I will survive, because you will make sure I’ve got my shoes on :)
(For those of you who have been reading for a while, you should know I came close to wearing them to bed with my pajamas tonight!)
But I didn’t….
With love and gratitude for all the unspeakable ways you are showing your support and love for my family, and my sweet Caitlin, d
I know you all want to know how she is doing. It is difficult to write, because I know the hurt you will each feel when I share this information. So if you would prefer not to know details, please stop reading now. Caitlin continues to deteriorate. Her speech is understandable only by a few people. She speaks quietly and with slurred words. She cannot walk more than a few steps, and usually needs to be carried. We have relocated a futon downstairs because stairs are impossible to manage, and she is terrified to venture to the upper level of the house. Her pain and discomfort continues to increase and so does her morphine dose. She insists on having me by her side at all times, even when she rests (because she doesn’t sleep well). This care, time and attention from me that she now requires has found me walking away from my phone and iPad for several hours at a time. I rarely see the computer anymore. And for this reason, I have gone hours without checking texts, and several days without seeing emails and Facebook. So please forgive me if I lack response to your incredible, thoughtful kind words and posts. When I do get to see them, I cry as I feel each embrace you share. They mean the world to me. But if I tell Caitlin,”just a second while I return this email” then I lose that many minutes with her. And I can’t lose any minutes with her right now, because in a few weeks, I will lose them all, forever. I know you understand, but I had to apologize anyway, and thank you again.
All the way home from the hospital today, I wondered and thought,”How will I say it?”
How will I tell you about our day and what we have learned about our daughter, our family and our future.
I got home and continued to ask myself over and over.
Then, it rained. Well, it didn’t just rain, it poured on my street; for exactly 3 minutes. It wasn’t even long enough to completely soak the driveway.
But it was long enough to produce my inspiration.
You can hardly see it. But as Caitlin and Campbell and I darted from the house in search of a rainbow, and turned around we saw this clearly and colorfully. In this picture you see half of the rainbow OVER OUR HOUSE. What you don’t see, because I was crying too hard, is the other half of the rainbow that fell to the ground on the other side of my house. My house was completely and perfectly centered underneath this rainbow.
What are the odds?
C’mon. You all know I don’t believe in odds anymore…
And I will admit something to you…I didn’t want to believe in God anymore. I still don’t want to, but I sure as heck still do. I’m mad at Him, but Pastor Roberts will help me sort thru that in time.
A long time ago, I wrote a post that spoke of rainbows. I explained that I believe rainbows are promises. BUT, I followed that statement with further explanantion that it may not be the promise we beg or bargain for, promise or plead for…
And tonight, this rainbow is certainly not the promise I have searched of for our daughter. But, we believe it is a perfectly coincidental promise that she will be taken care of and that she will be loved and she will be healed…but not by us.
The results of the MRI? Well, I can explain in medical terms first:
Significant progression of disease, mass shift, closing ventricle, morphine, comfort, initiate a call to hospice, so sorry, so sorry, so sorry….
What it means? Well, this is how I choose tonight to describe it:
that bastard tumor is growing at ridiculous speed, a few weeks left with our daughter, NO SUFFERING for Caitlin will be tolerated; but my husband will suffer and I can’t protect him, our other children are going to suffer and I can’t protect them, our parents and siblings will suffer and I can’t protect them, our friends will suffer and I can’t protect them, our community will suffer and I can’t protect them….so sorry, so sorry, so sorry….
Tonight I urge you to run thru the mud and get messy, go see Wreck it Ralph, put up a blow-up, not at all Martha Stewart, 6ft snowman in the front yard, eat dessert first, have a picnic on the futon, plan a trip to Disney, wear your pajamas and ignore the dishes…because it will make your children smile and be happy.
And please don’t say these words to your children if it can be helped,
“In a little bit”
“There isn’t time”
“Maybe another day”
Because I just got a full kick in the heart of “time” and all that it means, and it isn’t pretty.
And I’ll leave you with one more confession (my sister will cringe worst of all….)
I DIDN’T VOTE TODAY AND I DON’T CARE TONIGHT!!!!
with a truly broken heart, d
P.S. Thank you for the letters some of you have written. (See previous blog entry from Sept 17th?)
Others of you are avoiding me and my request. I am begging you to please write them, please send them, please help me to know she won’t die a life that no one will remember…..
I found my Christmas cookbook. It’s on top of my refrigerator. I wasn’t looking for it, mind you, but I found it anyway.
A week ago, I found myself seated in a smelly taxi with ripped vinyl seats and a dirty floor. It was a dreary day, with grey clouds filling the sky, and no sun shining. As we made our way from the east side of Manhattan to the west side, and eventually out to Newark airport, I realized autumn had descended on New York.
As we drove alongside the river, the bursts of color looked like they had been painted with an old paintbrush. The kind of brush that should be thrown away because the bristles simply don’t smooth down or stay together anymore. As a result, the painting this brush yields is typically ‘scratchy’ looking and does not have clean lines or solid definition.
The colors, however, were magnificent. Orange, both bright and burnt, yellow, dark red, and some brown wove between shades of green. The colors that undeniably accompany cooler weather, the opportunity to wear boots and sweaters, and children dressed up in costumes. The season that undoubtedly brings us apples and pumpkins, haystacks and scarecrows, and eventually, the smell of turkey with stuffing and mashed potatoes.
Growing up, in the northeast, autumn was my favorite season. I still love it, and all that it brings (holidays, football, cooler weather, the start of school), but it is certainly not as dramatic in Florida as it is in Pennsylvania and New York. Last week, though, the unsettling feeling that was beginning to form in my stomach found its route out and into my head and my heart.
I (admittedly and embarrassingly) love to decorate for the different seasons. While my friends will tease me that I rival Martha (Stewart) I am CERTAIN that I’m not that crazy. But, I do have red and blue bins that hold decorations for May-August that are filled with decorations patriotic in nature. Those bins are brought out when the pink bins containing Easter, St Patrick’s Day and spring decorations are put away. Recently, the blue and red containers were packed up and hauled to the attic to make way for the orange and black bins that contain Halloween and fall decorations. On one of my trips north, Courtney, Cole and Nana unloaded those bins and brought autumn into our home. Typically, right as Thanksgiving ends, we drag and lift and carry the red and green bins into the house to decorate for Christmas.
Uh-oh, Christmas decorations….
The last time I saw Christmas decorations we were in the final stages of packing them up and putting them back in their homes for the next 3 seasons. It became a frenzy of sorts; the effort to get them stowed away. You see, just as we were packing up the last of ‘Christmas’ I was watching my 4 year old trip, fall, and get diagnosed with an incurable brain tumor. As the last box was placed, I remember thinking,” Statistically we have less than a 30% chance she’ll be with us when we put these boxes away again.”
The Earth has almost made a complete revolution around the sun. Since putting those boxes away we lived through the bare, cold winter. The grey and chilly season with barren trees and gardens suited our moods then. Winter gave way to spring, as it does each year, and we watched as Caitlin’s symptoms and tumor seemed to disappear with winter. Again, our moods seemed nestled in the climate surrounding us. As buds formed on trees, and shouts of color and “life” came back to the outdoors, so did the hope in our hearts. Spring fell to summer, and it was hard to remember that the children splashing and swimming in the hot, humid summer sun weren’t all healthy. Our fears seemed to melt as quickly as the ice in freshly squeezed lemonade while we gave way to loose bedtimes and enjoyed the sand and surf of the beach.
School has been in swing now for many weeks. The air is cooler. The leaves of the trees are almost flashing with their brilliance. Soon those leaves will flutter quietly to the ground, one by one. Halloween is over now, and too soon, Thanksgiving will be here. Turkey day will be followed quickly by the green and red bins…
So, initially I thought, we just won’t get them out; Christmas decorations will stay away this year. It’s avoidance, true, but I’m not above avoidance if it’s necessary.
Instead, I’ve decided to decorate early. In fact,we are starting this weekend. (I know, I love the turkey’s day too, and I don’t like to rush him along, but we need some extra ‘Christmas magic’ right now.) And besides, I JUST realized, as we headed out the door to trick or treat, that the Christmas cookbook has been on the refrigerator, in a beautiful wrought iron cookbook stand, since last Christmas. It didn’t ever get put away. So I might as well just haul all the decorations back out.
Because Christmas will come, wether I decorate or not. And winter will descend upon us; and regardless of my home decor, spring will follow and summer after that, and of course, autumn would be the next one in the line up. The seasons won’t stop because the Earth wont stop revolving; even if Denise Downing doesn’t have the proper decorations. Life will still carry on; so the Downing family will carry on with it.
We will hope and pray and wish…
But we will balance our hopes with the reality that appears to be unfolding before us.
Our sweet girl is beginning to struggle. With all our hearts and souls we want to believe those struggles are related only to side effects of medications; chemotherapy, steroids, neurontin, etc.
We will find out with real proof on Tuesday, as we complete the routine MRI that has been scheduled for the last 7 weeks. Then, I will be able to explain more; more of her symptoms, more decisions we will be faced with and forced to make, more of the feelings in our hearts.
Until then, wrap your arms around each other. Love each other, be kind to each other and assert patience toward each other.
I have cried a lot lately. I’ve been sad, and angry, and worried, and scared. So, I’ve cried to let go of some of that emotion.
Today, however, I cheered.
Because when you go to a cheer competition, you cheer.
Today Courtney and her Jr. PeeWee cheer team left it all on the mat at their cheer competition. They set out early this morning to take on all the Mid Florida cheer teams, along with the PeeWee, Jr. Midget and Midget cheer teams. They boarded buses together and traveled to the arena at 6am. Some of us who are dedicated (ok, obsessed) with cheer moved out and headed to the arena with the buses. It allowed us to save prime seats for other family members who come out a little later; closer to performance times.
Jeff arrived with Campbell, Caitlin and our mothers several hours after I had been saving seats with many other Husky parents. Caitlin climbed up in the seat next to me as the spotters working the performance floor took advantage of the 15 minute ‘break’
built into the morning performance schedule.
They pulled out a T-shirt launcher and began catapulting tightly wrapped t-shirts into the stands. They started on the half of the stadium where the performing cheerleaders sit with their teams and coaches. (Once at the stadium, cheer teams sit together in a separate part of the arena. Only team coaches are permitted here; and the girls don’t come out to the spectator side. I had said ‘goodbye’ to Courtney as she boarded the bus, knowing I won’t see her until Saturday morning when she wakes up and we are home from New York.)
After about a dozen shirts flew through the air into grabbing arms of several hundred screaming cheerleaders, the spotters turned their attention to the fans who were eager to jump up, wave their own arms and scream for a shirt to be hurled their way.
All those Huskies around us jumped to their feet to get one of the 10 or 12 shirts headed into many hundreds of parent’s waiting arms. I didn’t get up. Engrossed in a chat with my sweet girl, Caitlin and I stayed in our seats and I focused my attention on looking at her to see how she was fairing this morning, since I hadn’t seen her when I left at 5:30 with Courtney.
As the screams around me got louder, and the arms waved harder, I guessed the shirt launchers must be aimed our way. I realized I was correct when a rubber-banded white t-shirt made it past all those adult arms and (oh yes) plopped down on the floor in front of Caitlin’s seat. (I’m not kidding, or exaggerating.)
Wow, right? Ha! keep reading…. (if you’re a crier like me, go get the tissues….)
Of course, surrounded by our Hagerty family who has been a wall of support, everyone and everything froze and you could actually hear the collective gasp when those Huskies realized where that shirt they had all been reaching for actually landed. I started crying so quickly I almost couldn’t pick it up. I did, eventually, and unwound the rubber bands, shaking my head in disbelief the whole time.
I should back up just a minute, and explain to you that while the 4 oldest teams compete, the 2 younger teams (the Tiny Mites and Mitey Mites) perform a week prior (last week) in an exhibition with all the other Mid Florida tinies and mities. Caitlin cheers on the Tiny Mite team, but due to her decreased coordination and balance, and extended time in NY that kept her from practicing, I had no choice but to pull her from the opportunity to perform. I had considered taking her to watch, and cheer for her team; but she was too sad she couldn’t be on the floor and I didn’t push her to go.
When the shirt unrolled and I held it up, I started to shake. It was the 2012 Tiny Mite/Mitey Mite exhibition shirts they sold last week at the arena. It is the shirt I certainly would have bought for Caitlin had she been able to attend. There was another collective gasp, then a shout from several other ‘criers’ among the group, “OMG Denise! A wink!”
I think so too.
After Courtney performed we gathered ourselves, the little girls and headed toward the exit so we could begin our day of travel by heading to the airport. My mom took the girls to the restroom as Jeff and I gathered our collective thoughts.
It was Courtney, with one of her coaches, on our side of the stadium! I was so thrilled! I got to hug her again before leaving; and we got to tell her how proud we were of her and her team.
"Thanks Mom, but guess what!" She pulled her arms from behind her back. "Look what I caught! Look what it says! Where is Caitlin? I want to give it to her."
If Jeff hadn’t quickly reached out and steadied me by grabbing my hand, my buckling knees would have sent me to the ground for certain.
It was the SAME SHIRT! I looked at Jeff, and back at Courtney; she was a little confused by our tears. We laughed helped her pull her shirt over her bow as we explained.
2 dozen flying shirts,
thousands of waving arms with grabbing hands,
not only do 2 of those shirts end up in the hands of my girls, but when you add in the significance of the print on the shirt itself, well, I’m going to have to say
back at ya God….thanks for that wink
(For those interested in results, Caitlin and I are cheering from NY tonight for all 4 Husky cheer teams tonight! For the second year in a row, each team placed first in their division! Watch out Southeast Regionals, here we come!)
with love, and a wink, d
I write this as Caitlin and I fly to New York to return to the hospital early tomorrow morning for another week of chemotherapy. She is tired, and is beginning to lose her hair. She has gained steroid weight, and the right side of her face has difficulty moving. (Sometimes she looks sad and uninterested, please don’t think this when you see her. She just can’t make her full Caitlin smile right now.)
Every parent of every child with DIPG hopes they will find a miracle. We are no exception. While our heads understand the facts and information of this diagnosis, our hearts feel we need to search some more. We certainly want to save our daughter, which is why we return this week for chemotherapy. It truly is difficult to plan ahead or to think through agendas that are not immediate.
But, the constant that remains in our lives is the love and support we continue to receive, and consider ourselves blessed to be enveloped in.
Thank you, to all of you near and far, for blessing us with each of you, and all that you continue to selflessly give.
Many of you have asked, via email, text or voice, “How is Caitlin? What comes next?”
I will tell you that after a tormenting week I am able to finally answer those questions, but not without some emotion.
We have consulted with professionals, reviewed research we have read dozens of times already, submerged ourselves in reports and medical records, and debated and discussed between ourselves. We have finally made a decision that has been agonizing to arrive at and agree upon.
The emotions wrapped up in this week start with this challenging choice, but end in a place far from questions and doubts that lead to resolution. This morning found me with a sweet 5 year old, who casually asked me if her bump is going to cause her “to have to go to heaven soon.” (For the record, this goes down as the most difficult 3 minutes of my life.) It continued downhill at the mall, where a young child pointed Caitlin out to the adult she was with as “that’s cheering for Caitlin, you know, the girl that’s going to die.” The day followed this pattern, but veered away from being ‘Caitlin-specific’ and changed courses slightly; venturing into other areas of life that should simply be off limits right now. I won’t unleash the feelings or the reasons here. Instead, I’ve written them all down to be included in the book I work at putting together.
That flood of feelings that need to be controlled are partially responsible for the harness I place on discussing the recent determination we have made for Caitlin. The other reason for reining in the reasons behind our decision is that I can’t find the words to explain or describe the emotional and medical components that have been added together like some kind of equation that “equalled” our choice.
Sunday Caitlin and I will return to New York for round 2 of chemotherapy. We will be home Friday evening. 2 weeks after we return home Caitlin will be scheduled for an MRI. Our hope is to find some reduction in the size of her tumor during this scan.
After this, we will be able to make our next choice.
It is a challenge to move from morning to evening and be certain of our plan for those simple 12 hours. We appear disorganized and spontaneous, when actually (and unfortunately), this is where we are forced to currently function. (Thank goodness for those who help us!)
I am forever, and always grateful for your love and support. Recently I have been slow (‘turtle-slow’) at responding to emails, texts and phone calls. Caitlin is with me all the time now. I take care of her at home when she doesn’t go to school, and I spend days with her at school when she feels well enough. (And honestly, I wouldn’t have it any other way. This is not a complaint, only a fact.) She is scared of the limitations and undependable way her body is responding right now. She is unsure of what will come next, and if she will be able to complete what she sets out to do. She hesitates to change rooms without me close by her side. This has led to a lack of response many times when you reach out to me. I assure you, I would love nothing more than to be able to talk, or text, or email. I apologize if this behavior reveals itself as rude and I ask for your forgiveness. We would certainly fall flat if not for the incredible ‘reaching out’ done by so many.
my love to each of you tonight,
with a gentle reminder to embrace your loved ones tightly, cherish them completely and don’t take any moments for granted…..d