I really try to be upbeat. There are many days I don’t have to try…it isn’t that I am naturally a happy person (because I am really not). It is that I live in a home with the happiest kid you could imagine…
How could I not be upbeat?
But there are days–like today–that I just feel like I am failing. And it could just be that I had a two steps behind kind of day, but it is also inherently more than that. Living with a child that you struggle to keep safe every day…a child whose one medical truth is that her condition seems to defy all logic…is just defeating at times. And in a way that is impossible to put into words. In a way that can at times make the rest of the world seem so foreign and sort of shocking.
Tomorrow we return to our children’s hospital to see the status of Esmé’s kidneys. They may be better…they may be worse. I am prepared that they may say we need surgery tomorrow. I am also prepared to be sent home to re-enter this holding pattern. And by “prepared” I mean…I am aware of these options and sort of dreading both of them. Part of me wants to just “fix” the problem (even knowing full-well as I do that there is no such thing in the world of Esmé). Part of me wants to put my head under a pillow and hope that everything will just “get better.”
I don’t have much of an idea of what to expect. As my dad would say: “Hard sayin’ not knowing.”
But all of this not knowing just gets to a person. So, I try to cling to the things I do know. I am making progress on the dissertation. I should manage to graduate in December (finally!). The foundation is very close to the first year goal of $50,000. I am proud of these accomplishments. I see them coming together through that beautiful combination of hard work, fate, good luck, and the support of a handful of amazing people.
But in this moment…that sort of waiting for something to happen…it all doesn’t seem like enough.
I’m scared.
I’m scared that Esmé’s kidneys will be worse. I am scared that at any moment we will roll backward to the times of non-stop seizures…or forward into new and unfamiliar seizures. I am scared I will never hear my daughter speak to me. I’m scared I will never be able to leave her alone. I am scared that one of these times I won’t know what to do to keep Esmé safe.
It doesn’t help to be scared. It is so hard to be rational when you feel this way. And it is so hard to be upbeat.
I know tomorrow morning I will take a look at that kid and I will feel the great joy her giant smile on that little face brings…and I know that she will look at me and not see someone who is failing. She will see Maman, who she loves. And I will find myself resurrected as her smiling Maman.
But tonight, tonight I feel like I am failing.
hug