Before you read the letter I’ve written below, I’m going to ask you to stop and make yourself aware of the motivation behind the effort.
Honestly, the motivation is two-fold; the first you can already guess, is that sweet 5 year old angel of mine. The second part to my motivation is a man, who on the surface, seems to have little in common with Caitlin, except that both died from a form of this nasty disease called cancer.
I challenge you to take a moment, and see the deep similarities that run between the 2 people that gave me the drive to step out of my comfort zone and make an attempt to turn the tides on DIPG.
Pull up your google, and search Jimmy Valvano: speech 1993 ESPYs.
Some of you know the man, know the speech, know the impact…
Look it up again anyway. Listen to the words he’s got to say. Then, please read the letter I’ve written. Feel free to pass it around and share it…especially if you know anyone who can help to get it read by the executives at ESPN and the V Foundation for Cancer Research that I mailed it to today. (SO MUCH THANKS to those of you already at work!)
as always, with my love and gratitude, d
(and the gratitude of this special girl too)
February 15, 2014
V Foundation for Cancer Research
106 Towerview Court
Cary, NC 27513
Dear Ms. Mazur,
“Don’t give up, don’t ever give up….”
Incredible words spoken by an incredible man.
Our daughter, Caitlin, was only 5 years old when she died in November 2012 after a 10 month battle with Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is an inoperable, untreatable, always fatal brain tumor.
Caitlin used her small voice, fierce courage and absolute trust to try and make a difference in the fight against DIPG and pediatric brain tumors. She embodied the ideals in Jimmy Valvano’s speech at the ESPY’s in 1993. She laughed every day, she was thoughtful every day, and she engaged her emotions every single day. Even though she was just a little girl, so much of Caitlin’s attitude and life and fight against cancer paralleled Jimmy’s.
Caitlin’s tiny presence made an impact among friends and family. Jimmy’s voice was much bigger, his presence bolder. He had a platform from which to project, and a natural ability to get people to take notice and listen. I’m asking to borrow Jimmy’s “voice” and “platform” to help make a difference in pediatric brain tumors the same way he made such a big difference in his own fight against cancer.
There is a silent killer running through America, attacking 250 innocent children every year. This intruder has been prowling our country for the last 40+ years, taking the life of every single child it touches. We know its name. We have an idea how to harness it. However, this thief will not feel the cold metal of handcuffs on its wrists; will not ever see the inside of a jail cell; will never stand before a judge and jury and never defend itself…because this invader is a rare pediatric brain tumor.
The treatment protocol for for DIPG has not changed in 30 years. A 6 week course of radiation temporarily shrinks the tumor, giving the child relief from symptoms and a brief return to normal life. But the tumor always returns, more vicious and aggressive than before, and this time, the outcome is certain death within weeks. Depressing, isn’t it? That is the sum total of treatment available to every child diagnosed with DIPG.
There has to be something more for these children. Our “something more” was a ground breaking clinical trial led by Dr. Mark Souweidane of The Children’s Brain Tumor Project at Weill Cornell Medical College in New York. Caitlin was the very first patient in the clinical trial. She still lost her life, but not before contributing to the research being conducted there for DIPG. There are doctors and scientists working incredibly hard to unlock the secrets to treating pediatric brain tumors, but they are limited every day by lack of financial support. Funding for children’s brain tumors is minuscule in comparison to other cancers.
The National Cancer Institute offers statistics to verify that increases in funding directly correlate to subsequent advances in research and treatment in many diseases, including breast cancer, colon cancer, and childhood leukemia. We have not found a cure for any of these diseases, and all of them deserve further attention and research. But there are other diseases and cancers, less well-known, that desperately need even a fraction of the available research funding. I long for a time when awareness of children’s brain tumors equals the awareness of a disease like childhood leukemia, and receives financial support to match.
I don’t have a foundation, and I don’t represent an organization. But I did have a 5 year old girl who fought a tough battle and lost. I come to you on behalf of the unknowing parents who will have to follow in my footsteps. For those anonymous faces and names, I have a request; allow those parents the gift of hope, to see their child survive and grow and thrive.
ESPN is a huge supporter of the V foundation. Each year around the time of the ESPYs, “ESPN Experiences” are auctioned off to raise large amounts of money for the foundation. What would happen if only ONE of those experiences got auctioned off in support of research for pediatric brain tumors? ESPN and the V Foundation could make a difference. You have the potential to raise massive awareness across America. You can speak louder than a tiny 5 year old who never had a chance to grow up and gain her own loud voice. I respectfully request that you consider the auctioning of one of these experiences to benefit the Children’s Brain Tumor Project at Weill Cornell Medical Center, in honor of Caitlin’s small voice.
I am certain that you receive hundreds of requests for funding, support, and publicity from individuals and organizations for many causes. Please make this the year that you decide to shout from the rooftops and start a fight against pediatric brain tumors.
cc: Mike Greenberg
Weill Cornell Brain and Spine Center
Children’s Brain Tumor Project
Mark M. Souweidane, M.D.
1305 York Avenue
New York, New York
Several people have asked me when I’m going to write something and post to the blog.
The truth is, I haven’t felt I’ve had anything profound enough to write about and post. I haven’t had an ultra positive spin on grief. I haven’t had any enlightening moments. I don’t want to be the ultimate martyr or appear pitiful…so I’ve held back. I’ve been encouraged to “just put it out there, even if it isn’t perfect.”
So here is what I’ve got for you tonight…
We’ve entered the phase I’ve been referring to as “forever after.”
It’s the place and space that arrives after the one year anniversary of the death of someone that is loved fiercely. I talk about Caitlin, but I know others can fill in another name for themselves.
‘Forever after’ is a place where we are forced to acknowledge a different phase of loss; one that permeates the rest of our lives. It is a loss that doesn’t magically get better after 365 days or suddenly turn a corner onto Easy Street.
Forever after raises new questions and issues that we didn’t (necessarily) consider before. Initially, our sights were set on a vision that encompassed making it through a first Christmas/birthday/summer/anniversary without Caitlin. But now that we’ve conquered that quest, we don’t feel better, our hearts are still heavy, and we have rubbed clarity into our eyes to see that last years vision was short-sighted; it isn’t one year we have to survive without Caitlin, it is, in fact, forever after. (See how I came up with the name for ‘this’?)
Some days are more sunshine than rain. These are the days when we smile and laugh with a sense of ease and a nature that is genuine. We see Caitlin ‘hidden’ in Campbell, or find a rainbow. These days I appreciate a butterfly or dragonfly that flits past us. I softly sigh as the corners of my mouth reach upward in a knowing smile as I say a silent thank you for a small wink or a quiet hello from an angel. These brighter days find me kicking my shoes off at the door (or in the car!) and I can talk to Caitlin without feeling my senses have been crippled with a fresh wave of pain.
Some days feel dark and ominous; dark clouds that aren’t carried away by a big gust of wind. These days we function because ‘not functioning’ isn’t a choice. (I leave my shoes on all day…sometimes I want to wear them with my pajamas.) These days I wonder how it can be that no one can hear my heart breaking all over again, and I’m certain, if I see anyone I know I will have to leave my sunglasses on to shield my ‘cried-out’ eyes. These are the days when I wonder if my ability to remember and recall easily and clearly is a blessing or a curse. It hurts to remember, but I wouldn’t ever want to forget. These are the days when I feel I’ve been paralyzed by our loss and ache. I read somewhere that losing a child can be equated to living with an emotional handicap; some days your functioning requires less thought and attending. Other days your emotional handicap threatens to take over and win. Every morning we wake up with it, and every night we go to sleep with it. It will be with us always, so we have to incorporate it into our daily lives and find a way to manage life with it.
I’m fortunate. When mine stunts my ability to move forward smoothly, or throws up a speed bump that I am unable to cross alone, friends and family seem to sense it and suddenly they are close by (physically, verbally, emotionally) through many avenues. They offer strength, a silly text, a thoughtful email, a hug or a quiet shoulder. (Or maybe a rainbow unicorn.) They give patience that does not end and love that is unconditional. They are forgiving, kind, caring, and when I need it, they provide a good kick to my rear-end.
As we all start 2014, I hope we all can remember what is important and what is not. I hope we prioritize again what really matters. I hope we ‘start over’ if that’s what we need to do. But for many, 2014 is a continuation and extension of 2013. Many people walk into this new year with the continued struggles, strains and stress, baggage and battles from before. Let us all remember to be kind and compassionate to one another. And since I feel like all I’ve done in this post is tilt my head far to the right, lift my left palm to my temple and pound it gently to let the random thoughts come filing out, I’m going to make an attempt to leave you with something worth remembering….it’s a favorite of mine that a friend sent me long ago…it speaks loudly with just a few quiet words…
love to you, best wishes for a healthy and happy new year, d
(and I couldn’t resist sharing this picture; a good friend sent it to me a few weeks ago…I hadn’t seen it before, and now it’s one of my favorites)
Intrigued? by the title?
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…
- 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.
This is a video of the speech I gave last year.
I’d be thrilled to have some of Caitlin’s fans, cheering with me at this year’s gala.
With all my love, d
It has been a while…
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.
hugs and kisses, d
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:
The team page for Weill Cornell’s team- The Children’s Brain Tumor Project Team
Information about DIPG (remember, look to the left and click on the patient story- it’s about our Caitlin!)
And, last, but not least..my favorite page! Grab the tissues before you read this one, it’s beautiful, and an honor; the RAINBOW AWARD:
Love to each of you, wish us luck! d
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.
Courtney and I have registered to be a part of the Weill Cornell Children’s Brain Tumor Project Team
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’