This is how we began

  

Part of a poem keeps running through my head. I thought that it was a line from an Audre Lorde piece but a quick bit of research says she was quoting a Pat Parker poem -

The first thing you do is to forget that I'm black
Second, you must never forget that I'm black

I first read that line in a college class and it has always resonated with me. It is about wanting to be seen as an individual but also to be understood in our context. I think about that when it comes to being Claire's mom. I want everyone to forget her diagnoses so neither she nor I are ever limited by the expectations they might provoke. But I also want them to always remember her diagnoses as the framework from within which I am mothering.

On one level everything I do would look familiar to anybody who has had an infant. I try to give her everything she needs, to help her development, to cuddle and snuggle her, and to make sure she feels loved. And I want to feel that kinship with other parents, that shared sense of how rewarding and difficult this all is. 

But there is another level. She has more appointments than a typical kid, therapy, cardiologist, extra weight checks at the pediatrician. And it is more important to pay attention to positioning because of her low muscle tone. Because everything is a little harder, she'll find a position that compensates and makes it easier but that doesn't help her get stronger and we have to help her by making her work for it. She gets tired easier than other babies because tummy time and the other exercises we do with her are pretty exhausting. And sleep is especially important, when she isn't well rested she has trouble with coordination and that can get in the way of feeding. We do a lot of research and check in with our doctors and therapists before we buy her equipment or chairs or start anything new. We want to make sure that everything we do supports her development if possible. 

Sometimes there are sacrifices. Seats and swings that would be convenient places for her to hang out safely on her own don't give her enough support and we've decided to not use them until she is stronger and able to support herself better. I am lonely and isolated but we are dedicated to keeping Claire as healthy as possible before her surgery and so we haven't taken her very many places or had too many visitors. 

I want to be seen on that level, too. Because it is such a big part of my life now, such a big part of who I am as a mother. 

Claire is a joyful baby, so calm and happy most of the time. She tries hard at everything she does and she is a silly girl who wears books as a hat.. 

I don't know what this journey is, yet. But I know we're on it together and for now, that'll have to be enough.