But that is not the post I am going to write right now. Because tonight I need to write to you all about Rebecca. One week from today we are going to be walking in the Curesearch walk in her honor.
In her memory.
I am remembering one year ago this week, on another brilliant September weekend, just-right air on our skin and fall sunshine slanting across our faces, when we walked around Wade Oval in her honor, and she was with us.
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| See her there? A dance captured in a purple dress, the most full-of-life thing in this picture? |
I am remembering the hope and the solidarity and the sea of purple and the feeling that anything could happen, that we could change fate by walking, side by side, in that sunshine. It was the sort of September day that lets you believe in miracles.
And she was with us. A purple sprite in our midst. Twirling in her dress, adorned with purple face paint. She didn't look sick. It was hard to be scared. We were together, and it was sunny, and the world was good and she would be cured.
One week from today we will walk there again and we will be searching in every ray of sunshine, seeking her little smile among the shadows.
One week from today we will come together in solidarity and, yes, in hope.
But not believing in miracles.
Just missing her.
I am hoping it will rain.
Because I am not sure how we will be able to handle another blue-sky perfect day without her there.
I didn't know Rebecca, or her family, very well last September. They had just started joining us for soup suppers the previous winter. Of course we'd met years ago, when Jack was just exiting Baby and Me at the Parent Center and the little ones, the soon-to-be-sixes, were just showing up. And our paths crossed here and there in the intervening years, as paths tend to do in Cleveland Heights. But in the winter of 2013 we were lucky enough to have the M. family in our home for a few Sundays, and Rebecca easily blended in to the ever-increasing troupe of children running circles through the house and pillaging the playroom.
Rebecca could usually be found swathed in several of our dress-up outfits, sequestered in the play kitchen with her best friend Ruthie. I always loved to touch her halo of dark curls as I passed her, and see her crinkle-eye smile-- or her fiery scowl, depending on her mood-- in return. She struck me as an agile and creative child with a personality as bright as her favorite clothes.
But truth be told, I didn't know her well. Because, you see, I didn't think I had to. I saw her, I think, as simply a child, a bundle of potential and light and years stretching out, and I assumed I had all those years to get to know her, to watch all of our children's lives unfold and enmesh as they grew up together. There was plenty of time for friendship to take root. I took their collective future for granted.
All that taking-for-granted.
In August we were on vacation at the lake when we read K's Facebook post that Rebecca had gotten carsick on the way to the Jersey shore. Then that she was still sick. Then with a gut-wrenching mother's intuition, that K. was worried something was really wrong. Then that Rebecca was being life-flighted to Philadephia. Then to her diagnosis, long scary words that none of wanted to think about. No one wants to think about childhood cancer. It is too profoundly wrong.
In my comfortable spot as a nearly-friend, I watched with concern but not investment. Because of course she would be cured. And it was all going so well! Good thoughts and prayers converged on Philadelphia and the tumor resection was successful. Treatment plans were devised, begun. The M. family, in what I would come to know as their usual grace under pressure, divided and supported and made it all work.
That day last September I was in awe of them. And proud to walk as a part of a team lending my tiny bit of support to them on their journey. We knew it would be hard. But it would also, certainly, be enlightening and inspiring as this gorgeous family, paragons of parenting who made life with three children look easy, allowed us to accompany them. I enjoyed reading Rebecca's father's blog posts, with their beautiful and cathartic writing that let me glimpse the reality of Rebecca's illness without ever having to get too close.
Fast forward (because that's what life does, it moves at fast-forward, always...) to this June. To a perfect birthday party at our local playground. Fast forward through 9 months of treatment that went so well, so well! and then didn't. Fast forward through a relapse of the tumor and aggressive regrowth. Fast forward through a race to find research studies, experimental treatments, something, anything to extend her life. Fast forward through anguish and make-a-wish trips and praying and Cedar point trips and awful decisions and sleepovers and driving and treatments and wishing and striving to find normalcy and enjoy the time they had. Fast forward because I don't want to look at that time for too long. Because I got to know Rebecca better. And her mother too. Well enough to see deeper into their reality than the lines of a well-written post. Well enough to know the pain and reality of living milestone to milestone and knowing that however long you have it will never be long enough. Could never be enough.
All that taking for granted.
That perfect birthday party. No one walking by us that day would have known. She didn't even look sick.
She died one week later, on her 6th birthday.
A year ago we trusted. We thought that medicine would be enough. We believed science would work miracles. We rested safe in the confidence that such a vibrant child surely would not die.
All that taking for granted.
She had only one treatment option, you know. That's all that modern medicine could offer a child with her diagnosis. One opportunity to beat an agressive tumor and if that didn't work.... well.
And here's the thing. I am still so angry that that's all she had. I am railing out in my heart because it is NOT RIGHT. It is not right that a 5 year old child should have just one chance, that there were no other ways to save her spark and let her life unfold. It is not right that this family, my friends, had to stop fighting and just hold her while she slipped away from them. It is not right.
I am so angry. And I am so sad. And I miss her. I miss her spark and the spark of my dear friends and the confidence and naivete of all of us last September.
It is not right.
I still feel the wreath of her little arms around my neck the last time she gave me a hug. I can't imagine what her mother feels. I can only see the devastation in her eyes and grieve for all she has lost.
It is not right that she should have to feel this.
Next week I will go back to Wade Oval. I will wear purple. I will walk. I will cry. I will look and look and look for a little purple dress and a halo of dark hair.
And I will hope.
I will hope that the collective resonance of our feet walking and our hearts grieving and the dollars that we raise will make a difference.
We can't change Rebecca's story. We can't press rewind, much as I would wish it. We can only carry on, fast-forward, and hope that perhaps in the future another little 5 year old girl will have another chance, more options, a future.
Please consider giving to Curesearch in Rebecca's memory. I will be making a donation today of $113, one dollar in remembrance of each day my friend has had to live without her daughter before we walk on Saturday. It is not much, but it is something. What can you give?
Perhaps, together, we can create change for the future. Or enough to hold on to as hope.
Perhaps, together, we can create change for the future. Or enough to hold on to as hope.
You can go here to donate to Team Becca .http://www.curesearchwalk.org/neohio/acobes
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