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We’re not raising an inspirational speaker!

We’re flying to Philly in ten days to see that expert doctor everyone’s been talking about! :) I’m hoping we get good news! I’m bringing the immobilizers to show him what she can do.

It’s weird. I no longer pray for a cure for my daughter. I don’t pray she’ll lift her arms or walk anymore. Now I spend a lot of time thanking God for all the people he’s brought into our lives because my daughter is “not boring.” ;)

I do pray for improvements. I pray for a magical surgery or a new invented gadget. But it’s just that this life of ours is so normal to me that I don’t think to pray for some miracle healing. My crazy grief and irrational fears have calmed. I don’t actually think about her disabilities much. Not unless she sees a doctor who gives us bad news, or if I don’t feel like she’s making progress. In fact we only had her knee immobilizers a week before I found myself in a slump over the fact that she wasn’t walking and running already! What’s wrong with my expectations? I didn’t even consciously know why I was bummed. 
I need my emotions to move at Laelia’s pace, not fantasy’s.
 
I was reflecting on my life with my little girl today. I used to think life was over because my daughter was disabled. I shuddered at the words “crippled,” “handicapped,” or even “special.”  I balled my eyes out the first time I saw a handicapped parking spot in front of our pediatrician’s office. I thought I wouldn’t be a good mom to this deformed baby with the beautiful face. I worried and worried and worried. No biceps. No strong muscles in her shoulders or legs or arms. Every body part twisted and stiff as iron! I was haunted by a long-worded diagnosis I couldn’t pronounce for the first week of her life. “Arth-ro-gry-po-sis type a-my-o-pla-sia.” I’ve been depressed, angry, even overly lethargic.  

Then this “disability” I was raising started to get really cute. :) Haha. She got curious. She got a personality. Then she learned some words. Whoa! Did she learn some words! :)  She really likes words. She went from having developmental delays in language to out-talking kids her own age in a matter of months!  And little by little this great support system found me. And they continually showed me that Laelia was not summed up easily by a doctor’s diagnosis. She’s more.  As my husband says, “We’re not raising some inspirational speaker.”  We’re raising a Laelia!

Okay I’d better explain the “inspirational speaker” riff. :) You wouldn’t believe how many people told us stories of inspirational speakers when Lali was born! We learned to fear this occupation. We just wanted Lali to be “normal,” not some speech-giver who makes typically functioning people stop and appreciate their limbs!  I guess when we heard the term “inspirational speaker” we didn’t equate it with real life. It never meant inspirational person (like Theresa the painter who paints with her mouth or Ward “Scarman” Foley who writes books and, yes, speaks to crowds), but it referred to this stigmatized disabled person who only had one talent: talking about their disability.  

I want more for my kid. I want her to love God. I want her to love knowledge. I want her to find something she can master and show to the world. I want her to be nice and kind to others. I want her married darn it! :)  And I want her happy and confident.

And I will be a meddlesome bother until all those things happen! Hey maybe I’ll make it into an inspirational speech! People will be amazed how she survived my parenting! :-D

This entry was posted on Tuesday, June 8th, 2010 at 9:00 pm and is filed under coping, god. 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.

3 Responses to “We’re not raising an inspirational speaker!”

  1. 1
    Carolyn Says:
    June 8th, 2010 at 9:16 pm

    I LOVE that Laelia is raising YOU to be an inspirational speaker, instead of the other way around :) You guys are amazing.

  2. 2
    Amy Says:
    June 9th, 2010 at 5:57 am

    I have followed you from day one. I think I start every response like that…I’ve enjoying watching you grow as much as I have watched Laelia.

    You are a fantastic momma…

    Now get speaking! :D

  3. 3
    Joann S Says:
    June 10th, 2010 at 2:37 pm

    I was wondering what I could say because I am in such awe of how Laelia has grown and what a delight she is to all of us. Anyway, I am not an inspirational speaker at all but you are an inspirational mom & writer –your journaling bring of great joy! thank you for sharing.

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