It’s September, again

It’s September. 

I’m reminded of a memory from this time last year. I was driving the kids to practice; Courtney to cheer, Cole to football. Campbell was with us in the backseat, chatting about her most recent favorite topic: becoming a unicorn. She had been on this kick for a few months and lately seemed to grow more and more desperate as I increasingly tried to control this fantasy by bringing in the gentle reality that children can’t transform into unicorns. As she pressed I asked,”Tell me again, why you want to be a unicorn?”

(In my head I had already silently listed the many possible answers to the question. She hadn’t ever given a clear definitive reason, so I kept asking the question…I figured it had to be something I had thought of: they are magical and mystical creatures. They have beautiful long, horns. They can fly (sometimes). They are fantasy and everything that represents fantasy in the mind of a 3 and a half year old little girl….)

She finally gave me her answer to my long asked question: “Because unicorns live on rainbows, and since you wont take me to heaven to see Caitlin, I’ll have to go this way instead.”

I’m still thankful I was stopped at a red light when she blurted that out, or I certainly would have wrecked my car. She has followed this moment in time by asking (every few weeks) if we will “check her horn, to see if it is growing.” We accomplish this by rubbing her head just past her hair line. It’s fantasy, but I don’t have the heart or the words to bring a harsh reality crashing down on her.

That was last September. Campbell, Cole and Courtney are a year older; a grade older. Some things have changed. And some things have stayed exactly the same.

It’s September.

I wasn’t going to write this entry. I decided sometime in late August that I wasn’t going to scream from the rooftops about Childhood Cancer Awareness. After all, it is everywhere, right? Who really wants one more mother whose daughter experienced cancer to be talking about it? I wasn’t abandoning the subject; I just figured we would be proactive it in a quiet(er) way.

A couple things happened: (the Empire State Building controversy, Time Square taking the lead on lighting up, blog posts by people I know and respect, some poignant Facebook exchanges). 

A delightful and charming tea shop opened locally, and introduced the Caitlin cupcake: an elegant (and delicious) rainbow-angel winged cupcake (and the proceeds go to Caitlin’s Dr. Mark and the Children’s Brain Tumor Project to fight against DIPG.)

A dear, close friend made a bold statement in a video that concluded with a pie in the face.

Sunday I took the girls to see Frozen on Ice. It was beautiful and Campbell was beside herself with excitement. We had a fabulous time. But when the lights got low, I found myself quickly wiping away tears as an intense ache settled in a different part of my heart. Caitlin never knew Elsa and Anna, never heard Idina Menzel belt out those incredible songs…and yet the weight of her absence was palpable. I fought against the pain, relished in the joy of what I had, and thought about writing a blog entry…but Let It Go…

Monday, the doorbell rang as I was frantically cleaning for an important day Tuesday. I looked, but saw no one. Then, a brown box on the corner of the doorstep caught my eye. I opened it, wondering about its contents, to find the new Childhood Cancer Asics I had ordered; delivered 4 days early. I giggled with excitement that they ‘coincidentally’ arrived early and I would be able to take them with me to New York this weekend to run a 5 mile race to help support the Children’s Brain Tumor Project and Dr. Souweidane’s research. I thought about writing a post again…but didn’t run with it…

Then, tonight, as I tucked Campbell into bed, we engaged in the long and drawn out process that is getting Campbell to sleep. We talked. She asked questions and I answered. She made me ask questions and she answered. Then, she took my hand as she often does, and placed it flat between her 2 hands. She tucked all 12 of our collective fingers under her tiny, soft cheek. It usually only takes moments from this point for her to actually hit REM; during which time I can carefully remove my captured hand without any incident or wakening.

Tonight, though, something else happened. Tonight, as our fingers were entwined between pillow and cheek, they got wet. Huh? Then, the quiet sniffling started, followed by breaths that only repeat in the pattern of a cry that can no longer be contained.

I leaned my cheek to hers and whispered to her closed eyes,” Campbell, are you crying?”

She quietly nodded her head; eyes still closed, hands under the opposite cheek.

“Do you want to tell me why?”

Well that was all it took! Up sat the girl, down went the fingers, and the voice increased in volume…

“I.Miss.Her.” (Sob)

“Please, please, please can I just go to heaven to see her for one minute? I miss her so much!”

Crying myself, I could only offer her my hugs, and sad assurances that it was unlikely we would be in heaven anytime soon.

More tears followed with more hugs, and promises that Caitlin can see us, and is always with us even when we cant see her…(I KNOW Campbell can’t be expected to understand this fully- but I have to try…)

I got her to lay back down. She re-assumed the hand holding-cheek tucking technique and whispered,” Mommy? Can you at least feel my horn? And see if it’s still growing?” 

So, I can’t go to sleep now, until I write this post. Not for me, and not for Campbell. It isn’t even really for Caitlin.

I write in honor of that sweet girl, that lived, and loved, and died of childhood cancer. But I don’t write it for her.

It’s September. In this month alone, 42 children will be diagnosed every day with cancer. 42 sets of parents will hear words that will change their lives. 42 families will engage in a fight they never imagined they would call their own. Every day, 42…

1 out of every 8 of those children will die from the cancer they will fight and struggle and hope against. 

8 days are already gone from this month. That means in September, 336 children and their families have already received the devastating news. Out of those 336 children, 42 will die from the diagnosis they received; regardless of how hard they fight. During the rest of September, 924 more children will sit with their parents as they learn of their cancer diagnosis; 115 of those children will die.

The lives of 336 families have been turned upside down, and inside out already in the month of September. 924 families have no idea they will receive shocking, life changing information in less than 3 weeks.

That’s just September, of this current year.

I could multiply it out for you…but I won’t.

I will simply tell you it is those faces we haven’t seen. It is the names we don’t yet know. It is the lives that don’t even know they should be bracing for impact right now.

THEY are the reason I will write and post this entry.

Because, if 20 years ago, someone would have taken the time to shout it from the rooftops, and not be afraid to share it too much or too often…

Because, if 20 years ago, another mother would have stood up and said,”NO MORE”…

Caitlin might still be here today; laughing, learning, loving; cheering and smiling; playing and growing.

So for all those who come after Caitlin, I will add to the many voices already out there, and I will say,”NO MORE”

Childhood Cancer needs to be brought up and spoken about, yes, to make people ‘aware.’ And then we need to take that awareness and turn it into support, for research and programs and clinical trials…and we need to find a cure…

I hope that I will maintain Caitlin’s style, grace, courage and tact when I talk about it. And when I tie the biggest gold ribbon I can make around my front tree, and take a whipped cream pie in the face, and eat too many yummy cupcakes, and when I run 5 (long) miles on Saturday, and wear those new Asics. (OK, no one can wear them with grace, or style, they are so neon bright that you need sunglasses to glance at them directly!)

And I will keep talking, and writing, and running, until…

Hell freezes over? 

Pigs fly?

The cows come home?

How about UNTIL WE FIND A CURE, 

or the bump on Campbell’s head turns into a horn…

whichever comes first.

image

Up, down and up again…

Far away from home, on vacation in the rural Northeast, I woke up early and went for a run in the quiet beginning of a new day. It was unfamiliar terrain and I set out with a lot of hope and a little luck that I wouldn’t get lost. I turned left, went up the hill, crossed the street at the stop sign, turned right…

Big homes on large pieces of land, trees in all shades of green covered the mountains that sat as my backdrop; all around me were familiar signs of a beloved childhood that I never realized meant so much to me.

Big, tall maple trees provided shade on a sunny morning. Hydrangeas bloomed in every shade of pink and purple and caught my eye and made me smile. Rhododendrons, Japanese Maples, proof that there is a grass softer and prettier than that ridiculous St. Augustine in my yard at home…

Around the bend, across a ‘main’ road to another small neighborhood as pretty as the one I had just exited. Same familiar music from the same old playlist (enjoyably) assaulting my ears; but that wasn’t what motivated me this morning. This morning it was the small memories of decades ago that made me want to keep moving.

When I hit what I thought was a halfway mark in my time, I turned around, determined I could easily go back the way I had come. Down the street, around the bend, WHOA! Where did this big, long, stretching hill come from? I must have run down it earlier, but it didn’t seem so daunting earlier, and it struck me…

This wasn’t the first time I stood at the bottom of something comparatively insurmountable. With my legs complaining from the already numerous ups and downs I had completed, I decided I would walk up it. I got to the top, feeling slightly disappointed I didn’t try to run it, but soaring for having made it with a strong, steady (albeit walking) gait. I turned and walked a few short steps, taking some deep breaths, to find myself at an intersection of streets with the intent of turning right to head back ‘home’. I looked left to assure no cars were approaching and I realized I was at the top of another steep and winding hill, and that earlier metaphor took on a secondary meaning.

Those steep hills are everywhere. I bet someone else ran up (or walked up) that hill to my left, maybe earlier, or maybe later; but I’m certain that hill was conquered that day.

We all have them; those seemingly insurmountable ‘hills’ or mountains we just don’t think we can get up, or over, or through, or around…We think we won’t work it out, or solve the issue, or survive it when it’s all over…

And somehow, we find the strength and the courage and the perseverance to conquer it…

even if we walk instead of run.

I smiled as those thoughts slammed into each other in my mind. I waited for a car to pass and turned to run. A familiar song in my ears (one that doesn’t belong on that playlist), and I smiled again, cried for a moment, and then in front of me was another hill. This one went down.

It would have been easy to run, but I walked this one too, with the same steady and controlled gait I had used a few steps ago.

The last few yards before I got back to my original destination found me at the bottom of one more hill. (OK, it was small, tiny even! but for this transplanted Southern girl it was steep!)

I’ll have you know I ran up this one.

It wasn’t strong, or steady, and had no control…but I did it anyway.

I won’t hope your terrain in life is always flat, and without cause for finding your strong and steady gait.

It’s the hills and the valleys, the mountains and the edges of the cliffs that give us cause to worry and be concerned, make us angry, or sad or scared…

But getting to the top, whether we walk or run (or hell, sometimes crawl), gives us a sense of accomplishment and a sturdy heart. Sometimes that accomplishment is more rewarding than other times; sometimes you are hard pressed against the wind; but every time you stand at the top, you can look back down and say,”I did it.”

I know it’s a bit metaphorical, and somewhat philosophical, and maybe a bit cheesy… but it struck me last week, and hung on for a while, and I thought I’d share.

Be kind to others, they may be climbing their own mountains, even when it looks like they are on flat ground.

All my love, d

What do you think the captain of the Titanic did?

Did you ever read the story of Samson and Delilah? I don’t know all the details, but I know enough to know that he loved her….why?

I read a lot.

It tends to draw out the “questioning” side of my personality. 

Campbell asks a lot of questions right now; I mean ALOT OF QUESTIONS. When she starts asking them, I often think to myself, this is what happens in my own head regularly; because I have more questions than there were snowflakes in the Northeast this past winter. The difference between Campbel and I is that I keep them inside my head and she blurts out every single one of them. 

We are settling into a place that continues forever after in our lives and hearts. It is a difficult place to define. It is a hard place to explain. I know where we are, but I don’t have the words to tell you…

But I will share something that jumped up and grabbed me by both feet two days ago. 

I have been (trying) to train for the Disney half marathon in November. Last week I edited and added to the playlist I use when I run. I deleted a lot of songs that I always fast-forwarded through. I added some new songs that motivated or propelled me to keep going further in some way. I cleaned it up and perfected it (for the current moment in time.)

Note: While I am not a computer or tech genius, I can hold my own and am more than competent of editing a play-list or two on my Apple devices. I know enough to know what I’m doing and not make mistakes.

Enter: The wink that clutched me by my lower extremities (MID-RUN) and threatened to bring me to my knees…

Jeff stayed at home with Cole and Campbell. I took Courtney to cheer practice. I watched for a little bit and took off out the door of the gym with an “I Love You” in sign language to my cheer girl (and favorite coach!)

Almost back from a painful run my song changed from something angry; think Violent Femmes or Nine Inch Nails-ish (please don’t judge) to Mandy Moore. I know, right? Mandy Moore?!?! I took a clumsy step or two (or three). I fumbled with my headphones, grasping desperately for the button that would advance the song. I couldn’t find it. It got lost somewhere in the collar of my T-shirt. The song started and I stopped cold in my tracks. 

Can’t stop driving…I don’t know why

So many questions…I need an answer

Whatever happened to Amelia Earhart?

Who holds the stars up in the sky?

Is true love just once in a lifetime?

Did the captain of the Titanic cry?

Someday we’ll know …If love can move a mountain…

Someday we’ll know…Why the sky is blue…

Someday we’ll know…Why I wasn’t meant for you…

Ok- “It’s a love song!” I think to myself. No reason to cry or stop still, or think this relates to me.

Does anybody know the way to Atlantis?

Or what the wind says when she cries?

More questions…seemingly silly and useless…but important in the way they are presented by the person making them heard…

Someday we’ll know …If love can move a mountain…

Someday we’ll know…Why the sky is blue…

Someday we’ll know…Why Samson loved Delilah…

One day I’ll go…Dancing on the moon…

Admittedly, I have left off a line or two of the lyrics that make this a love song…But sometimes, those are the ones that reach into my soul and hold on tightly…

I bought a ticket to the end of the rainbow, 

I watched the stars crash in the sea,

These are good questions. I may add them to my list for when I get to heaven. But then, the song starts to come to a close, and this the last line before the chorus repeats itself again:

If I could ask God just one question..  Why aren’t you here with me?

I will admit that my knees buckled, the tears flowed before I was able to choke them back, and if you happened to be in Oviedo near the CVS/old Bruesters Tuesday evening and saw a big hot mess; it was me. WHAT was this song doing on my playlist? It had no right! I DID NOT PUT IT THERE! yet, there it was…

(and it was followed by another, Our Lady Peace: I Know You’re Out There…another song I did not put onto this playlist…yet, it was there anyway…look it up if you have a free second)

I’ve debated sharing this; does anyone even want to know? But tonight, as I started to write, unsure of whether it would end up in my private computer file or on the blog, Campbell watched one of her favorite movies, Spirit. It is an incredible movie, given as a gift by a dear, special, loved and missed friend. Jon Bon Jovi compiles all the music, and Matt Damon is the voice of Spirit the horse. My girls have watched it so often that sometimes I rarely hear the scant amount of words spoken. Tonight I caught a few seconds as I finished this writing… this is what I hear as I’m finishing this writing (video won’t load)…”You will always be in my heart…” …”A spirit that cannot be broken…” I looked up to see a fierce embrace between two loved ones…

Okay, so I’ll take a chance and see if maybe you’re interested…

All my love, (again) d

A final note to tonight’s questions without answers. I do know the answer to one of them…

Can love move a mountain?

Hell yes it can!

The proof? Well, it showed itself shortly after May 18th of this year, when our dear friend Katie Chandler spent months organizing a birthday celebration event in Caitlin’s memory to support DIPG research for the Children’s Brain Tumor Project, we discovered that more than 1000 people walked in a 5K (locally and virtually) to support the Children’s Brain Tumor Project  at Weill Cornell Medical College and Caitlin’s Dr. Mark, and that together we raised $25,000; 100% of that money will go to support the VERY RESEARCH Caitlin began with her participation as the first patient in a Phase I clinical trial: the path to find a cure for DIPG… 

it’s the one we believe in…

Does love move mountains? you tell me…reread that paragraph and tell me what you think…I think love DEFINITELY moves mountains. 

 Thanks to each of you, for bringing your shovels…your support, your love, your caring and your memories….ALL MY LOVE….XOXO

A transformation- and a homemade rainbow

I had to think back, with effort, to the time when Caitlin when first diagnosed. Early 2012…I tried to remember what her room looked like. I found a quiet place, closed my eyes and hit rewind in my memory. Aha! Purple paint still on the top half of her walls, wainscoting on the bottom. A full size bed placed against a far wall, draped with a bedspread full of purple, green and yellow. A purple flower lamp made of paper sat atop a tall dresser, and a contemporary pink jewelry box full of the treasures of a 4 year old little girl was centered on a shorter dresser. Picture frames scattered on either side.

And there was a crib, butted up against the side of that full size bed. Yes, that’s right! I remember now…Campbell was still in a crib since she wasn’t yet 2 years old.  Caitlin had been so excited to share a room with her baby sister. She insisted the crib touch the bed so she could hold Campbell’s hand at night.

Then, when Caitlin was undergoing radiation, we knew we had to move Campbell to a regular bed because she was too tall to fit in the crib/toddler bed any longer. So we transformed the room. 

Pop built a fabulous corner unit; complete with 2 twin beds in an L-shape, anchored at the corner by a tall, wide unit, with shelves above each bed and a common top capable of holding lots of dolls, and big vases filled with sand and bright pink and white gerber daisies. Caitlin picked out bright pink comforters with giant white and black polka dots. Hello kitty sheets were under one of those comforters, and Minnie Mouse sheets under the other. Nana built a great window treatment consisting of a black pull shade and sparkly, bright scarves and valances. I vowed to paint the walls in a theme that encompassed and embraced the signature bows of both the kitty and the mouse, since the purple now seemed so glaringly obnoxious that even Caitlin asked for it to be changed.

But clinical trials took place. Surgery happened, followed by frequent trips to NYC. My other children demanded their mother’s presence. School started, tumors grew. Chemotherapy (in NYC) started and then ended in a short time. Tumors grew again. A little girl lost her fight…the walls never were painted.

Cleaning up and cleaning out and going through the most prized possessions of my 5 year old little girl was agony. Folding clothes as I pulled them off hangers and out of drawers to be placed in rubbermaid containers was nothing but a blur in time; the same way I saw those clothes through tear filled eyes that blurred my vision. I accomplished it quickly, because I needed the pain to end just as fast. I did all of it, so it could just be ‘done.’ Well, I completed almost all of it…those shelves above her bed? They just got cleaned off 2 weeks ago, when I finally gave in to Campbell’s 15 months of requests to decorate her room “in a rainbow…”

It has been a struggle to find the right mode, moment and method to redecorate the sweet little bedroom my littlest children shared together. Those purple walls and pink comforters have been an eyesore for over a year; but I couldn’t find the energy to paint over the walls or buy new bedspreads. I searched my heart for a design that could honor Caitlin, while allowing Campbell to make the room hers. Her message to me was clear: leave my Yaya’s bed, and her Hello Kitty sheets; give me a rainbow that is my own, but allows my sister to stay in this room with me.

You can imagine, trying to balance Campbell’s need to redecorate, but still find a way to hold fast to her sister, reflected my own heart and my reasons for not having changed anything earlier. I was balancing the grief for all of us. (After all, Cole, Campbell and I all have evenings when we climb between those Hello Kitty sheets to sleep. It is often, but it is special.)

With the help of a patient husband, and the energy of a 4 year old little girl who is fierce and persistent, the room has been transformed. We think we have honored Caitlin with the same quiet beauty she honored all of us with while she was here. I have given Campbell exactly what she has requested (to “sleep under Yaya’s rainbow every night”). I have made the room Campbell’s room, while not completely taking Caitlin away from her. It is another balancing routine I engage in regularly: remember Caitlin, without allowing our home to become her shrine. (It’s so much harder than it sounds!)

As a parent you paint your child’s room, pick out curtains and comforters, decorate with child friendly themed adorations, and let them gather their collections of special things that are displayed proudly. You never imagine that one day you will be redecorating because your child died…. 

It is another part of the impossible; impossible decisions, impossible heartache, impossible to understand…but, hopefully, there is possible healing…

all my love on this Easter weekend, d

The Next Genreation

There is a ‘tween’ girl I know. She is sweet and kind and beautiful. I’ve been fortunate enough to watch her grow since she was born; she is like another daughter to me. Every night she falls asleep in the same fashion; she washes her face, brushes her teeth and puts on her pajamas. Her mom and dad give her kisses and tell her to sleep well. She rolls over on her side, pulls up her covers, and tucks a favorite sock monkey and a stuffed hello kitty under her chin and drifts off to sleep…

Someone asked me why I haven’t written much lately.(I have written….enough to fill a book…but I don’t know what to do with that material. Would anyone want to look at it, read it, publish it? I don’t even know where to start…(If anyone has suggestions please email me…I’d love some advice.)

The truth is, I don’t know how much more anyone wants to hear about my ‘grief.’ It feels like the “same old, same old” stuff. It’s life. It keeps moving forward, regardless of my feelings, emotional state, desires or intentions. Some days are horribly dark and sad; I retreat and stay ‘away’ at all costs. Other days are ok or even almost good; I laugh and smile and engage. And some days are what they are; moments of good and bad, mixed together, praying people treat me normally but desperately hoping they remember the child I no longer have ‘in tow.’ How do you balance that? How do I balance that? I have no clue. Some days it feels like its a little plastic or unnatural.

I have found a place that is genuine though.From the very moment Caitlin was diagnosed until this moment in time, it has remained consistent. This ‘moment in time’ exists without fail with a certain population; children.

And by children, I mean all those under the age of 18 years.

Children who make rainbow loom bracelets in rainbow colors to give as a gift; (sometimes they give them to people they have never even met, but because their mommies used to be friends long ago, they get excited to pass those special treasures on)….

A special girl who envelops her long-time friend and begins a campaign to make scarves for the purpose of raising money in an effort to find a cure before time runs out…

A small boy who lives in the (cold) north is told he is being swept away for a Florida vacation in less than 2 months. He darts into his art supplies to begin a masterpiece painting; a big piece of paper with a rainbow, because a visit to the Downing home is on the agenda…

A trio of awesome siblings, whom we treasure dearly, but seldom get to visit. Typically they dress in their school uniforms, but on a cold winter day in February, they descend from their bedrooms, dressed for school without input or advisement from their parents. It is a dress down day for them; and of all the free choices they have for this cancer awareness/fundraising-dress down day…they have chosen short-sleeve t-shirts in rainbow tie-dye. On the back, their shirts say “always cheering” in honor of Caitlin. They are reminded of a summer celebration that collectively brought together all the children of a special group of friends…

There is a special little boy, sensitive and caring. He often cries when we talk of Caitlin one-on-one. When asked what he wanted for his birthday a year and a half ago, he replied “just money.” His parents had no idea his desire for cash was the means to an end as a gesture to hand all that money to Caitlin so she could get “whatever she wanted” because he knew her time was running out…

“Strong,” “tough,” “solid” boys who play lacrosse and football and wrestling have signed banners and posters for Caitlin with, “I love you Caitlin,” “You are the sweetest girl ever!” “Please get well soon so we can play!” One of these boys fell into my arms the evening before her celebration service. He couldn’t find words and I knew he was infinitely embarrassed at his tears, but he was so touched by that little girl…

A set of siblings, who posed for Christmas pictures on the beach in rainbow sweatshirts. They light a gummy bear night light and remember her often in stories to their parents…

A dancing duo of sisters, who surprised many, even their own mother, with a competition routine entitled “Rainbow Sleeves”…it’s a tribute that you wouldn’t believe…

A set of children, who consider Caitlin their “other sister” because we have raised our children to know nothing different. They are each moved at different times and in different moments, but they never feel the need to hesitate or hold back with me. They tell me what they remember, what they wish, and how they loved their removed sibling. Sometimes, when I watch closely, I can recognize the looks on their faces as they see “Caitlin” in Campbell. A simple look across a room is all it takes to confirm we feel the presence of an angel…

High school seniors who write college entrance exams about Caitlin’s impact…

Pictures and letters and emails and texts and instagram/facebook posts…

Speeches and essays…lemonade and slushy stands…tree plantings, yearbook honors, and planted gardens…

Uniforms worn proudly in honor, balloons let go in memory, bricks layer in remembrance…

Hugs and stories told verbally, rainbow citings and gray bracelets that break from being worn out…

Classmates who will not allow a diagnosis to stand in the way of friendship…

Friends who loyally and willingly stand by their loved friend, as they watch their sister die…

My own children, who wear bows in their hair to preschool so “Yaya can easily see them from heaven,”

and blow kisses and make hearts toward the heavens before they take the competition floor,

and, at the least expected times, say,”I sure wish Caitlin was here to see this!”

Children don’t hold back, and they don’t forget…they aren’t scared to be honest or open or forthcoming…

There is another special child…she emulates a quiet beauty that I imagine Caitlin would have grown to hold as a teenager. She has entered the arena of pageantry…all for one reason: to bring about awareness of DIPG. She was crowned in her first pageant, and in June she moves on to compete for Miss Florida Teen. She has asked Courtney to stand by her side as her Sunshine Princess…again, our family is so honored.

This same incredible teen has planned and organized a special event, one I’m hopeful you will consider. On Sunday May 18th, a 5K will be held. The physical location is Oviedo (the mall to be exact), but everyone is invited to participate virtually if unable to physically participate in Oviedo.

The date? Well, it’s Caitlin’s birthday weekend!

The cause? Well, the event is to benefit the Children’s Brain Tumor Project (Dr. Mark’s program at Weill Cornell). 

Please go to the following link for more information or to register. There are lots of fun things to see there. Make sure your state is represented! And we will see on May 18th which state outside of Florida has the most participants! Register soon to be certain to get your free Cheering For Caitlin tshirt! Click on this link 

http://katiechandler98.wix.com/cheeringforcaitlin?from_fb=1

Finally, that sweet tween from the beginning of this post…when her face is clean and her teeth are shiny; when her nighttime clothing is on, long after practice is over and homework is complete…she climbs into her soft bed, says goodnight to her parents, and cuddles with stuffed animals that are hers now, but once belonged to her ‘other’ sister. She holds them with a carefully tight embrace, every night, remembering and loving a special little girl,

who impacted the lives of adults…

and of many children.

all my love, to the grown-ups, but especially to the children tonight…thank you for the hugs and kisses, pictures, poems, essays and letters, memories, stories and rainbow citings…I hope you always bring them to me with your intense honesty and genuine emotion…next week, as I travel to NYC to humbly become a part of a parent advisory committee, I take all these children with me in my heart, all my love tonight, d

A (final) special message tonight: Cancer doesn’t always win. Today, cancer lost a fierce battle. Today, after a friend fought against cancer for  9 months, he received confirmation that cancer lost. He is in remission. He has drawn strength for himself, and his family, from Caitlin and her struggle and loss. Today, he made sure that cancer went down losing. Congratulations Coach! We celebrate with you and your family today! All our love, every day, but especially today!

Stepping outside the comfort zone…and into the ESPN zone

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)image

February 15, 2014

Sherrie Mazur

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. 


Sincerely,


Denise Downing

www.cheeringforcaitlin.com

cc: Mike Greenberg

Kevin Martinez

Susan Braun

 

Weill Cornell Brain and Spine Center

Children’s Brain Tumor Project

Mark M. Souweidane, M.D.

1305 York Avenue

New York, New York 

212.746.2821

a princess and forever after?

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)

Hi friends! We’ve gotten it together quickly, with the help of some amazing people. The rummage sale will be in Oviedo at the Live Oak Reserve Clubhouse on December 1st! I hope you’ll stop by and check out all the items we’ve been collecting, since all the proceeds will be donated to DIPG research! We are still collecting any items you may need taken off your hands. So if you’re cleaning out closets, garages, rooms or the attic and find lots of things you haven’t used in a long time or just don’t want anymore, let me know! Please email me and we can make arrangements to pick those items up from you or have you drop them by. Thank you, for always supporting, and for continuing to cheer! xoxo, d

Hi friends! We’ve gotten it together quickly, with the help of some amazing people. The rummage sale will be in Oviedo at the Live Oak Reserve Clubhouse on December 1st! I hope you’ll stop by and check out all the items we’ve been collecting, since all the proceeds will be donated to DIPG research! We are still collecting any items you may need taken off your hands. So if you’re cleaning out closets, garages, rooms or the attic and find lots of things you haven’t used in a long time or just don’t want anymore, let me know! Please email me and we can make arrangements to pick those items up from you or have you drop them by. Thank you, for always supporting, and for continuing to cheer! xoxo, d

Two “Part II”s

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.

Shine Your Way is the name of this musical treat. Here’s the link to the youtube video http://www.youtube.com/watch?v=5tyWxLjGgg0. (Close your eyes and just listen the first time thru.)  

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…

The Big Thaw

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.)

I hide.

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…

xoxo

Not All Pioneers Wear Funny Hats with Raccoon Tails…

Pioneer:

- 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

image

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.

Wow…

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.

http://youtu.be/UT2ezYSiQss

This is a video of the speech I gave last year.

http://www.youtube.com/watch?v=jxenx4LqrWI

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. 

“Forever after….”

Nope. No thanks. I’m going back to bed to hide under the covers. I’ll come back out…..

never.

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.’

A-ha…

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, 

WITH RESPECT

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… image

image

Candyland and Chutes n Ladders

 

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.

And, then,

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…

 

image

image

These Bruises, Make for Better Conversation

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. 

Another brick…

“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

 

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