Tuesday, April 15, 2014

Knew It Was Coming, But...

...it doesn't make it any easier to hear confirmation.

I have to admit that I've been deluding myself.  Deluding myself into thinking that Evie would be okay, that she'd beat the genetic odds and have nothing to worry about...maybe a bit of shyness and difficulty in math, but otherwise totally typical and average.

She went for an evaluation today, and the analysis was that, at five months old, she's at about three months in cognitive and physical development.  That was a bit of a gut punch, I have to admit.  I was really, really hoping that it would come back with a near-dismissive "pheh, she's FINE!  Why are you even here?!"

I really wanted to hear that (I wasn't there personally; I only got the message afterwards).

The optimistic view would be to fall back on the "all children develop at their own pace" cliche.  But we lived through that with Henry already.  And denial can be a powerful defense mechanism to protect oneself against news one doesn't want to accept or acknowledge.  Henry needed help and he's getting it, but it's a slow battle and it certainly hasn't been easy by any stretch of the imagination.

The prospect of repeating it with Evie seems daunting right now.  It was that reason that made me wish and hope that Evie would be the one we didn't have to worry about.

But then that brings on another issue in that if Evie was the one we didn't have to worry about, would we inadvertently neglect her in favor of caring for Henry so much?  I often find myself getting hauled off by the boy in his next quest to ramble face first through the kitchen and front room, while Evie lays by herself on the floor or in her bouncer seat.

There are times when two of us adults are wrangling Henry while the third is preparing dinner....and Evie is left alone.  And I feel a crushing guilt when I see that.  I think that may be a contributing reason to why I've gotten so attached to the carrier harness thing that I stick her in so that we can walk around together while my hands remain free (I've eaten sandwiches above her head while wearing it...I used a plate!).  Henry complained quickly when he was put in it, so I only used it once with him.  Evie doesn't complain so she goes in it as often as possible.

And of course, then comes the snowball effect of "if I start paying more attention to her now, is it because of equity or because she needs the extra care now as well?" and round and round I go in my head in a self-defeating circle of rhetoric.

So, Evie's therapy sessions begin next week and like Henry's, they'll go up to the end of the school year.  I won't get to see her awake today because it's nearly the end of this winter semester for me. The guys in my group project wanted to meet early before class to finalize our presentation, so I'm off to school without stopping at home.  That makes me sad, but it's all for the greater good, right?  All to improve my future employment prospects and chances, right?



1 comment:

  1. It's Tish. I'm being lazy and not figuring out the login thing. As a "normal" sibling of a Downs kid, I can tell you that if Evie had been "normal", it probably would have occasionally been hard for her, but she probably would have gotten it. In some ways it helped that my brother was 9 years younger than me, in that I did have a solid understanding that my parents loved and cared for me as well. In any case, most normal siblings get it, for what it's worth.

    I'm sorry you got the diagnosis today. It's really hard. Take time to mourn and grieve the future that will not be. My mom said that was one of the biggest things she needed to do - to mourn the child that she didn't have, in order to accept the one that she did.

    If Evie loves the harness, keep with it! :) I think, now, you're just going to run into the worries that every parent runs into, where you want to make sure that your kids get an equal (or fair - and no, they're not the same) amount of time, with no favoritism or unintentional discrepancies. I think all parents of more than one kid wrestle with this.

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