Some pictures and video from this past weekend

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.

http://www.youtube.com/watch?v=3bOuFWC1V9A&feature=youtu.be

hugs and kisses, d

Not aDrive By

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. 

Mission:complete.

Nope.

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.

Faith.

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;

or God…

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

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Wednesday turned to Thursday…

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:

http://weillcornellbrainandspine.org/in-the-news/moving-towards-cure

The team page for Weill Cornell’s team- The Children’s Brain Tumor Project Team

http://www.braintumorevents.org/faf/search/searchTeamPart.asp?ievent=1062114&lis=1&kntae1062114=9DD87C313D03429FA0B696E1B3003434&supId=0&team=5449206&cj=Y

Information about DIPG (remember, look to the left and click on the patient story- it’s about our Caitlin!)

http://weillcornellbrainandspine.org/condition/diffuse-intrinsic-pontine-glioma-dipg

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:

http://weillcornellbrainandspine.org/rainbow-award-2013

Love to each of you, wish us luck! d

Brady-esque

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.

It’s not.

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.

http://weillcornellbrainandspine.org/in-the-news/moving-towards-cure

Courtney and I have registered to be a part of the Weill Cornell Children’s Brain Tumor Project Team

http://www.braintumorevents.org/faf/search/searchTeamPart.asp?ievent=1062114&lis=1&kntae1062114=9DD87C313D03429FA0B696E1B3003434&supId=0&team=5449206&cj=Y

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.

http://weillcornellbrainandspine.org/rainbow-award-2013

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 ;)

 

love, always…d

(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.)

A Special Link to Important Inofrmation

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’

http://weillcornellbrainandspine.org/condition/diffuse-intrinsic-pontine-glioma-dipg

I’ve Never Been Good at Good-Byes

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.

always.

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.

my random thoughts for a Friday night…

Switch on the sky and the stars glow for you…

I have been a ‘student’, for quite some time,

…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.

~listen carefully

~hug tight and squeeze hard

~crying is ok; whenever, wherever, without explanation or guilt

~laugh

~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 sucks

~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…

all my love, and gratitude to my ‘teacher’…d

 

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Math Was Always My Weakest Subject…

 

When does 16 plus 24 equal 41?

Tonight.

Tonight, it did…and it still does.

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.

Tears followed.

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…

always.

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

 

Chasers and Pavers

I didn’t come up with that title.

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.

I think,

no, I know,

I’ll always chase them.

love, d

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.)

http://www.braintumorevents.org/faf/search/searchTeamPart.asp?ievent=1062114&lis=1&kntae1062114=9DD87C313D03429FA0B696E1B3003434&supId=0&team=5449206&cj=Y

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."

thank you, my sweet friend

A Chinese Proverb

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Maybe Freud was right.

Maybe I was already lost in thought.

Maybe it really happened.

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

Science and Physics

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.

Tonight,

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,

every.  single.  time.

the end.

lots of love, and hugs, 

and winks (even for my non-believers)…..d

 

image

What if the Soul had Voice?

 

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.

with love,d

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…”

The End of a “Year,” the Beginning of June…

hello friends,

It has been a while…

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.

So, I’ll keep believing…

 

Thank you, with all my love, d

Sometimes, believing is the hardest part…

I leave you with this tonight, as I finish my thoughts for tomorrow’s post❤

The Middle of May

May is two-thirds over.

Honestly, the hardest parts of May are over.

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.”

All my love,d 

 

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