Today was a very good day.
We have a lot of pretty good days now…a lot of days that I find myself saying “aside from that, it was a great day.” But today, today was just a straight up very good day.
It was a good day for a lot of reasons. We had a good follow up with a local doctor I like. A friend went out of her way to get a medical item to me for Ezzy. My sense that Ezzy needed to stop napping was validated by a fantastic and active day with her and an easy transition to sleep just a few minutes ago. The weather was nice enough to have her walk outside in her gait trainer, looking ridiculously cute in her poncho from Trendy Tots (quite literally stopping all passersby in their tracks as if they were stunned by the cute).
All of that was nice…really nice, in fact. And the day also included a few exciting interactions about the work The Cute Syndrome does on PCDH19 research. This was encouraging.
Oh, the coffee I drank today was also particularly tasty.
But this is not why today was a very good day. Today was a very good day because someone decided to come over and say hello to Ezzy and me.
We were in the basement of our local hospital going through registration for a test and all of a sudden there was a woman there asking if this was Esmé and if I was her mom…asking in the sort of way that I knew she already knew that, of course, this was Esmé and I was her mom.
See, she had recognized Esmé. They have been following our story for a while—the result of our news story a few months back, I believe—because their child, who is much younger than Esmé, has been struggling in many ways that are similar to Esmé.
We exchanged information quickly and agreed to talk after our children had their respective tests. A few phone calls later and we had gone over a good part of both children’s medical history…and I was able to pass on a few ideas from our experience with insurance, genetic testing, hospitals, medicaid, and atypical early childhood development…you know, the kind of things that you only learn in one of two ways: (1) someone who has done it tells you how or (2) you bang you head against a wall until something gives.
I have been on the receiving end of this sort of information so many times–and will continue to be certainly. I have also banged my head against a wall a lot (it is always the wall that gives, by the way). And this will not be the last time I get to offer up this kind of information to someone else. But there was something about this exchange that just reminded me why I do what I do–why I choose to put so much of our lives out in the world in a number of ways.
I have often questioned this choice. Sometimes I feel I am over sharing…and I wonder who the hell cares… And there are things I keep off this blog and our facebook page, of course…things that are secret, things I’m not ready for people to know, things I’m not ready to admit “out loud.” There have been so many in the last few months that, honestly, I have chosen to not write because I don’t see a way to write around them. Recently I have thought about shutting down this blog…starting one with a different name, where I can say the rest of all of that…but I haven’t (Or have I?!).
But this, today…today was exactly why I took this path. Today I made all the insanity we have been through in the last three years make some sort of sense–if only because it helped someone else feel less alone than I did when Ez was a year old…even for a few minutes.
And more than that, I have put Esmé out there in the world in a way that hasn’t always made me comfortable…but today I got to meet someone who looks at my beautiful daughter and feels hope for her own beautiful daughter.
And that is enough to make it a very good day.