Below is something I posted on my personal blog (which is not limited to thoughts about Laelia) a little while back. It was meaningful because it was one of the first blogs where I faced one of Laelia’s limitations head on, but didn’t cry while writing about it. I had just done a Bible study called Living Free, and it left me completely and utterly peaceful. That peace didn’t necessarily affect my emotion (as in “Weeee, I’m super happy!”); it instead affected my ability to be logical. (Something depression can rob from me.) So this entry was very meaningful to me at the time because it denoted a change in perspective and attitude.  Note my favorite sentence below, “I think she’s great. I think she’s the best. So walking must not make a person ‘great’ or ‘the best.’”  That was actually an epiphany to me at the time!   

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Subject: My baby might not… walk.

Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen recently. (Don’t get me wrong, they are the most positive people I know and had to follow that up with praises about her passive range, etc. ). Point is, she probably won’t walk, at least from all accounts.

But I’m not sad. I’m not depressed. She’ll do other things. She’ll get around. If she uses a chair or hovercar or whatever, it will happen.

And in Heaven she’ll fly.

So I’m not upset. I have peace that doesn’t make sense. I think at least in this way I’ve accepted my baby for who she is. I think the world of her. I think she’s great. I think she’s the best. So walking must not make a person “great” or “the best.”

So maybe I’ve grieved enough to let go. Now I can just focus on raising my little squirmy, fussy, grinny, wiggly, singing, goober-faced kiddo without letting her disabilities get in the way.

My friend, Sue, told me I would know when I was getting better the day I spelled “arthrogryposis” or “amyoplasia” without capitalizing them. Last week I did that while typing up a blog. Today I did that in my heart.

We’re gonna be just fine.

To see how Laelia is doing, go to her website: www.laeliasky.com

This entry was posted on Sunday, September 21st, 2008 at 7:25 pm and is filed under coping. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.