Tuesday, May 24, 2011

Lucy language

There is an enormous range of abilities within the SMA diagnosis, even just within the "type 1" category.  Some kids can talk, most can't.  Some can move their arms, some can wiggle their fingers.  Some can breathe on their own for hours at a time, or even all day; some are vent dependent.

We weren't really sure what to expect for Lucy in the beginning.  I'm talking after finding a competent (to say the least!) doctor, one who didn't just say blandly, "Well, yeah, you *could* trach her, and will need to eventually..."  We didn't know if Lucy would retain any physical strength, or be able to talk.  As she grew, she lost much of the physical capacity she once had.  She can't lift her arms off of a flat surface, can't turn her head while laying down.  We now need to be extra careful when positioning her or picking her up - we almost always have to suction her first.  And Lucy can't talk.

I am extraordinarily grateful for the strength she has been blessed with; being diagnosed with a disease like SMA, it's more than we could ever ask for.  That doesn't mean that it doesn't hurt my heart that I don't hear her say "Mama," or get to listen to all the annoying questions that exasperate most parents.  She can say "ahv" for "I love you," and it melts me every time she does it.  For the most part, however, Lucy does not open her mouth to make noise.  It's a lot of work for her to even open her jaw, so the majority of her noise-making is humming and squealing.

It seems like she goes through phases of "talking" and not talking.  Weeks will go by with only hums and squeaks, and I'll start to think "okay, she probably can't any more."  We do oral therapy twice a day, but there's only so much you can do - it's not something you can force.  Then, after I've resigned myself to the fact she just probably won't be talking anymore, we get a few days where she wants to talk a lot.  And to me, it's like hearing angels sing.  It makes me teary with joy.  It's not words, or even syllables, but it doesn't matter.  It's Lucy language.


Lucy and Ethel said...

What a sweetie! Of course, her two fantastic parents might have something to do with it :)


Victoria Strong said...

Beautiful Barb. You always so eloquently express what it is to be a parent to an SMA child. Gwendolyn is like Lucy -- some periods of chatter, then weeks of silence. When those simple sounds are present, even when just barely uttered, it fills my heart with so much joy. I'm so glad you caught Lucy's sweet sounds on video.