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.
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…
“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?
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.