Figuring it all out

I hate not knowing more than I hate anything right now. That's where the worry is. I hate the awful responsibility of not knowing if I'm doing enough for my girls or if I'm making the right decisions.

We see the neurologist for Cora soon and it's looking more and more likely that she will get some form of CP/hemiplegia diagnosis. Finally today it seemed like her PT saw what I have been seeing all along about her fluctuating tone and how she holds her fist. It's almost like she didn't believe me up until now until she saw that she might also have some involvement on her right side. She was also very unsteady on her feet during her PT session today. I hate that it "helps" her case more when she is at her worst.

She is something though, that Cora. She is so driven to move and get going --not to mention get into everything. She seems to devise ways around the limits of her functional grasp with her left hand and hasn't known anything different. I get a bit upset on the days when she seems to be falling more often. She just gets up and gets on with whatever she had in mind. Or she gets mad and demands help. For her birthday, she got the Fisher price learning piggy bank toy and she can't quite make her hand and wrist rotate as it needs to. Sometimes I can turn the pig so the coins fit a bit easier for her. She resists most attempts to try and help her hand over hand. But oh the yelling when she can't figure out why her body won't work the way she wants it to. Give her time.

Time. I've feel like I've waited too long with Lizzie. But I think that's more because looking back I see that she was always the same as she is now. She was our first and even though I've had a lot of babysitting experience, it's just not the same. She was such an intense baby and at times would just scream and scream and scream. I used to think that it was just her untreated reflux, but now it's seems that it was and is her way. Life comes at her hard and she deflects what she can and carries on. I have to remind myself too, that she also has only known life like this.

It's just so hard to soothe her some days. I despise hearing that all two year olds have tantrums or like to be in control or this, that or the other thing. It's different. There's just this qualitative difference to everything about her and it's only so much more apparent now with her sister in our lives. Cora is as engaging as Lizzie is anxious and retreating. Some days are better than others. Some days I just want to cry. Some days I do.

We finally had some snow of note lately and I bundled up the girls and took them out back to play. Or tried to anyway. Cora was too cold to care much, but Lizzie had wanted to go out in the snow. But when we got out there, she had no interest in playing anything. Not in her toy house, not giving the snowy slide a try. Nothing. She was content to pace around one small patch of snowy patio and draw letters and pictures in the snow. I failed even to get her to talk to me about what she was doing or why it was fun.

The things she does, her obsessions du jour or her long-running perseveratives. Are they fun? Functional? I just don't know. Some days I hate that I ever showed her a letter or a number or taught her their names or sounds. I hate that I ever caved and let her watch Sesame Street. It's not as if she wouldn't have found something else to take the place of her comforting "things." I'm just angry sometimes I think because I don't have the joy that I would like to have. I see her doing things like lining up her Sesame Street blocks, minus the letters that spell Elmo and I only marvel a tiny bit that she knows how to spell elmo. I sigh to myself. I see a nonsense activity. I anticipate the tantrums ahead or the insistence that Cora not touch her latest "castle". And it's not a matter of sibling rivalry. It's just not. It hurts her to jump out of the routine and comfort of stacking/aligning/arranging letters/paging through books.

I want that joy back. I don't know quite how yet. The larger part of me know necessarily has to focus on finding out more about how her brain works. Do we pursue a diagnosis beyond the dyspraxia? Does Asperger's fit? Is she "just" overly anxious and perhaps somewhat gifted?