I have been trying to write this post in one form or another since February when Claire died…but every time I sit down to write it I am overcome with emotion and have to stop.

I never actually met Claire. I never got to see her face in person. But I felt I knew her–and I cared for her deeply…and I mourned her loss in a way that is difficult to explain, except to say that part of me understood that Claire could have easily been Esmé…and Esmé could have been Claire.

Claire’s mom and I had found each other on Facebook a few years ago through one of those vague pleading posts the parents of undiagnosed children make, listing symptoms in hopes that someone will recognize something helpful. Our little girls had so much in common: low tone, intractable epilepsy, feeding tubes, aspiration–as well as beautiful smiles, rosebud lips, and eyelashes that could knock you over from across the room. Early on I felt that the two might just share a diagnosis. As we got to know each other better I grew to love Claire–carefully watching every hospital admission, every update. And, admittedly, Claire and Esmé were so similar, even after they each finally received different diagnoses, I connected their fate on some level.

But at a certain point their paths started to diverge. Esmé was making slow gains, getting better control over her seizures–and her friend was not. In the time I knew her Claire lived through impossible odds several times, so, while I knew she was in the hospital after some particularly trying seizures, the news of her death stunned me.

It was a cold but sunny day here when I read the news. Ez and I were sitting in the car in the driveway while Ez slept peacefully in her car seat. I couldn’t take my eyes off of Esmé, because I knew how easily our situations could have been reversed…we’ve come so close to losing Esmé that I had begun to glimpse the edge of that abyss. And what I know is that I know nothing about how deep it goes and how dark it gets…

Here’s the thing about being in the community of medically fragile children: loss is everywhere. Some days I feel like it is stalking me. Even when I am not immediately concerned for Esmé’s health, I am acutely aware of my friends who have lost or in the process of losing their children. Even as Ezzy stabilizes, I am aware that other families in our situation might not have had access to the care we’ve been able to provide…that children in developing countries don’t survive preventable diseases, let alone debilitating disorders like Esmé’s.

Even as Ezzy thrives I am aware that it only takes one seizure, one pneumonia, one slip for it all to come apart.

As I write this I feel as though this all sounds rather despairing–perhaps especially to folks who have not spent a lot of time around children who are critically ill. And its true. There is absolutely nothing in this world, in my humble opinion, more deeply disturbing than the reality that some children do not get to grow up, that some children spend their lives in pain…It is a reality that most of the people I knew before having Ez didn’t have to think about regularly. I certainly didn’t think about it if I could help it. Now this reality consumes my thoughts much of the time–if not for Esmé, for the children of my friends, for the children I see at our Children’s Hospital.

And it is hard to be in this community sometimes, while I do occasionally feel like my heart cannot bear to feel another loss, and while I do despair sometimes, I can tell those of you who don’t know, that like all places of deep sadness and loss, the world surrounding critically ill children has a kind of breathtaking beauty all its own. There is beauty in the love and support that I have found–almost without exception–in this community of parents and children. There is beauty in knowing that we mourn our losses (and celebrate our gains) across geographic, religious, diagnostic, and political barriers. There is beauty in knowing that we live with a constant reminder to make the most of every day–and I say this not in some sort of cliché or flippant way–because you never know what the next day will bring.

There is beauty in the deep gratitude I feel for every moment of Esmé’s health and stability…

And there is beauty in having known Claire, knowing that there was a little girl in this world who, like Esmé, was a light in her family…who always seemed to radiate kindness and love and goodness. I am so grateful we had the chance to know her.


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