Monday, July 18, 2011

Throwing Out the Script

There should be more stories about Cate on this blog.  Not just because Cate is amazing in all sorts of ways that still surprise me, but also because hers is a happy life and more parents with kids who have Sensory Processing Disorder probably need to be told that.

At a birthday party recently I talked to another mom whose son just got a diagnosis that's different than Cate's (she has SPD), but whose therapies are similar (OT, social stories, among other things).  I was struck in this conversation by two things.  First, she had all the same concerns and questions and feelings that I had before and after Cate's diagnosis.  I thought we had done something wrong (we didn't read enough to her in the womb, we should have put in her childcare earlier, we should have sung more songs), I didn't know whether I should tell people about her SPD, it continues to be difficult to explain to Frances why Cate has modified rules.  We had a great talk about strategies for all those things.

I was also struck, though, by how much of our conversartion was about re-writing the story we had in our heads about our kids.  We both have first daughters who are gorgeous and smart and outgoing and fabulous in all the ways you might want for your daughter.  Those first daughters have done very little to challenge our notions of what it means to be a parent or what it means to be a member of human society.  But these second kids--so many things we had planned, so many things we assumed to be true, so many things we took for granted are suddenly gone.  We are having to write this new story as we go along.

It's been more than a year since Cate got her diagnosis and I find myself loving this task of writing a new story (though it's not without its anxieties) and also realzing that Frances' life should also be lived without a script.  This mom just got her child's diagnosis and I sensed that she had a lot of grief about having to let go of her script and that it helped to find someone who understood how that felt.  And who wasn't still grief-stricken about the process.

So maybe I'll share some more stories about Cate in all her awesome-ness and about Frances, who also continues to be amazing (even if she is moody all of the time now), and how life goes on, even off-script.

1 comment:

Alison said...

As you and Claire have been telling me in writing group, it does seem that a parent's level of satisfaction has to do with how well they're able to let go of their role as scriptwriter.

And I think it's probably easier to let go of the script early on, like when the baby's just a peapod.

Cate is definitely fabulous! As is Frances (I'm sure she saves her moodiness for you).