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

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

  1. Carolyn says:

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

  2. Amy says:

    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. Joann S says:

    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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