It's a grieving thing

I know it is. I know that's what this is. This thing I can't quite shake. For most of the last week and a half since we got Lizzie's* diagnosis, almost anything makes me want to cry. It's not like I haven't known all along what her quirks and issues are with regards to her gross motor delays and behavioral issues. There is just something about getting her diagnosis (developmental coordination disorder/dyspraxia) that made it more real. It's not going away. It affects her in many ways and she will need continuing therapy to help her progress.

It doesn't help that the week following her diagnosis I had to have her first meeting for the transition from Early Intervention (EI) to the Intermediate Unit (IU) as she'll be turning 3 this Spring. I had been told that because she is so bright and doesn't require speech or a resource teacher that she won't qualify for "just" OT or PT for her feeding and gross motor issues. Not good enough for me. And after her diagnosis....really not good enough for me.

I am so burnt out from researching her diagnosis and the laws and state codes related to EI and the EI/IU transition process. But I keep on with it and do my best to do the best for her all the while wondering if it's my fault in the first place. Something I did during pregnancy, something from her horrendously long induced labor, something, something, something I maybe could have done differently.

It really won't make a difference now. It doesn't make a difference now. I'm reaching so hard to speed ahead to that place of acceptance where it'll all be okay. But right now I'm just stuck on sad.

And then multiply it by two. Her younger sister, Cora*, also receives EI for feeding issues related to reflux and PT issues that are just now coming to light. She has always had trouble with extension which we thought was reflux related. She only ever liked to roll to one side. She never took to cross-crawling and instead did a kind of crab scooting thing. But I've always sensed it's something more than that. When she claps her hands she holds her left and claps to it with the right hand. I mentioned some of my concerns at her 9 month well check and the pediatrician sent us to the orthopedist who pronounced her "fine" as far as he concerned, but maybe see neurology. So that appt is coming up next month. In the meantime, she has started walking. I was of course thrilled to see this and at 10 months even, when her sister didn't get the hang of walking until 13-14 months. But the less she crawled, the less she used that left arm to scoot with and the more worried I became. Her PT of course noticed some of the issues with her "back kneeing" or hyperextending on the left as well as her left foot toeing in. But now it's even more pronounced that she holds her left arm up to her side and her fist closed as she walks. She will play with the left hand, but reverts to the fisted position. I know it all points to some sort of mild hemiplegia.

Cue the guilt. Again. It's too much, you know? What did I do? is all I can wonder. She'll be fine. I want to get to that place where I don't worry or cry and know that she'll be fine. She's spunky as all get out and doesn't let anything stop her. My head is a jumble of all these and related thoughts. Am I doing enough? Do I insist on more frequent therapy?

Oh and I hate that my husband never openly worries over any of this stuff. Of course he's not having to worry that it's anything he did to cause their conditions.

So I'm not entirely sure why I'm starting this blog, but here it is. I'm just a mama to two sweet girls who is just trying to figure out what to do next.

*not their real names (though similar!), but perhaps a bit better than using some clever variation of "toddler" and "baby" ....