In honor of Esmé’s birthday today, in honor of this little girl who has brought such light and joy into my life, I want to tell all of you about what happened yesterday.
You see, I have written about three versions of her birthday post…some of them trying to explain the way I feel on her birthday others getting so far off topic it no longer seems to be a birthday post…in each version, though I found myself coming back to yesterday…and I think this is what I want to tell all of you about.
Because what happened yesterday says all of the things that I want to say about Esmé, about who she is and how she touches the people around her…and it also says so much about the feelings I have about her life.
Yesterday we went to Boston for some tests. I thought they were simple…and they sort of were…but it was all just a bit more than I had anticipated. It was invasive, somewhat painful, disconcerting, and lengthy. We were in a room with Ez…my dad and I at her head and side, respectively. A neurologist opposite me on a computer, two nurses at her midsection dealing with two catheters, sensors, a needle, and her legs, and another nurse and a urologist toward her feet at another computer.
The first thing you need to understand is that she knew, more or less, what was going to happen…She has had so many damn tests done that she knows a lot of people in a room means it’s not going to be just an x-ray. But she giggled and smiled at the nurses while my dad and I teased and joked with them. When the neurologist entered the room and started talking to me I was reminded immediately of why we go to this hospital…and struck once again about the power of my child to reach people.
He had read her chart…clearly pretty thoroughly. First he said (and I am getting teary thinking about this) something along the lines of “I’ve looked at her rather lengthy file and you have a very unusual child. She is very special…she has been through a lot. She deserves a Purple Heart.”
It turned out nicely enough, that they all had heard about The Cute Syndrome Foundation…they all had looked up Ez and seen her picture. They knew her story…her smile.
Esmé, not being one to ever disappoint, continued smiling and laughing…glancing back at Dad and me occasionally to check in…and as the test went on she complained a few times–at things that were painful (they were testing sensation, in part). And then more, toward the end because she was frustrated and very uncomfortable (and, I’m sure, quite annoyed)…she wanted to fight, but she knew that it wouldn’t help. I could see it in her face. She will fight me worse when I try to wipe her nose–because she knows she might win. In this case she knew this had to be done.
It is so hard to see that look in your child’s face…to know that she knows that thing that usually only comes with maturity (if ever) of getting through something that is unpleasant with determination and focus and acceptance. I feel like I see it so often in her…and every time I want to pick her up and run. Honestly, I think about it…I can see myself doing it. But the room was calm and the nurses and doctors were so thoughtful and careful. And, like her, I knew we just had to get through it.
She’s been through so much worse, really.
But here is the thing. She expressed her discontent right through to the end…and the moment it was over, her smile was back. She was happy…not relived happy (although that too, I imagine). She was just happy. Back to Ezzy. No grudge. No pouting. No anger.
Just Ezzy.
And I couldn’t have been prouder of her…and I couldn’t have been more devastated that this is her life. That she knows to accept this. That she trusts me enough to know that I would never ask this of her if it wasn’t necessary…but it isn’t just this test. It is all the others she has already had…and all the ones I know are still in the future.
I wish she didn’t have to know this. But I am so proud of the way she is…
And here I am on her birthday. I did my best to make it special. But all of the typical ways of celebrating a kid’s birthday wouldn’t really be about her, you know? She can tolerate dinner out, she tries to engage at parties, she might taste some ice cream…but these are like behavioral, physical/social, and/or feeding therapies for her–they aren’t fundamentally enjoyable.
And all I could think, was that compared to yesterday the most normal of days would be a tremendous treat for her…just an easy typical fun-ish day. So that is what we had.