I had a long talk with Julia of Kidneys and Eyes on New Year's Eve about how I keep a lot hidden, bottled up, tucked away, and certainly NOT public or shared in this blog - particularly that relating to my daughter. I have a lot of reasons for that - fear of confrontation and nastiness, not sure if my daughter's story is mine to share, a general sense of privacy, a feeling that things like this just Are Not Spoken Of, and more. But after talking to Julia and feeling tired of feeling isolated, unsupported, adrift, I've decided to start writing more about that here, at least for now.
When my daughter was just about a year old, we were given her diagnosis of cerebral palsy. Before, I held out hope that she was just a bit behind or a bit delayed and that she'd catch up on her own. After, I thought I at least had a path. "OK, so we have a name for this and a diagnosis," I figured. "We have an answer and we can move forward, and we can start therapies, and we have nowhere to go but up up up." It's how I deal with things - I compartmentalize. I put that diagnosis in a box labeled "Cerebral Palsy" and I started filling that box with things I knew, things I learned, things I understood.
What got confusing for me is that the box...well, it wasn't quite as self contained as I'd hoped. I am not even talking about the shades of grey that involve a CP diagnosis or the fact that no two people are affected in the same way or even that my child's CP is apparently of the more unusual variety. I'm talking about how I believed CP was only going to affect her muscles. But no, it affects more than that.
When we try to take her into certain stores, she starts screaming for what is absolutely a reason to her but not an obvious one to me. If she's not in school, we can't go certain places, but we also don't always know what her triggers are. She's fine in some stores that are nearly identical. She's fine in the mall.
When strangers come out of nowhere and talk to her (usually store clerks), she flips out. And attacks US.
When people stare at her, she screams. While I do not blame her, sometimes those people are genuinely being kind and/or curious rather than having malicious intentions.
She's aggressive sometimes. She gets overwhelmed easily. She rips and destroys the same books she happily and politely reads on other occasions. She bites toys. She puts small things in her mouth and laughs. She lashes out. Her brain doesn't work the way my brain works--and logically I know this, but then I get surprised or confused or frustrated all over again.
I believe she'll grow out of a lot of this. I really do. I believe that with time and maturity, some of this will calm. I believe that she has a lot of pent-up frustrations from not being able to communicate her needs easily, particularly because she is so smart (and surprising me daily with what she knows, understands, absorbs). I know that sometimes a few steps forward in one aspect is accompanied by some steps backward in another. I know what her diagnoses are not and at least I have that. Funny to look at it that way, but sometimes I do.
But it is confusing. And tricky. And right now, it is so very, very hard. There is no manual or road map, there are no answers, and every day that box I tried to make disintegrates just a bit more and the dust makes me sputter and choke.