The power of speech

So much has been happening, but I've been having a hard time writing - or wanting to write. Amidst lots of great and fun moments, I've been working on not becoming overwhelmed with worry. I've had a hard time putting my finger on the exact problem, but today it became clear to me. I'm realizing more and more everyday that Taylor, and our entire family, has such a long haul ahead of us. I've been so fixated on getting Taylor to walk for the past two years that I've tried to compartmentalize the "other stuff" that we need to work on. As she approaches her third birthday later this summer, we realize desperately that she needs to learn to eat and communicate. The mouth, as it turns out, is a complex set of muscles and the brain power required to swallow, to chew, to eat, to push air out to speak is significant. And, it is really, really hard for Taylor.

Taylor so badly wants to be able to communicate. She still can't say any words consistently besides "dada" and while we understand many gestures and movements that she makes - she can't speak. A day with Taylor alone is a quiet day. You realize what a gift it is to hear your children babble, to hear what is on their minds, to hear the funny silly things they say, and most importantly, to hear what they need. It is such a gift that she can smile and giggle - emotion is a wonderful thing. But language is powerful - and nearly three years is a long time to wait for a voice.

She is now attending speech therapy once a week - and it is very obvious that she is going to need much more help. She really enjoyed the first several weeks, but the past few sessions - she is very sad. And she isn't stressed or pushed in any way - she is simply mad that she can't speak. All toddlers deal with this to a degree - but I am so sad that Taylor can't make words. Everyone that works with her for any period of time will say "she's in there" or "there's a lot going on in her head" - and we are so hopeful when we hear it. At the same time, I can't imagine how frustrating it is for Taylor to not be able to share what she is thinking. I will look at her when she is zoned out at Jacob's Tball game and think "is she incredibly bored?" "could she possibly be having fun?" Some day I really hope she can tell me. Because the reality is there are kids with her condition that never learn to speak. I am trying to stick to my sometimes helpful mantras and not let myself consider this possibility, but it is top of mind right now.

The good news is that her walking is coming along nicely. She is working really hard and we've cut her therapy down to 90 minutes, instead of 2 hours, because she is doing so much physical work. She loves to walk - she still needs a bunch of assistance, but she has learned to pick her feet up and move them. I try to remind myself of all of these small wins - not long ago she couldn't pick up her own feet. She would get so mad looking at her feet and willing them to lift - now she can do it and she is on her way. I believe she will walk and I can't wait. She is so ready to move, walk and run. We are still months and months away, but I can envision the finish line.  

I'm hopeful every other hurdle will have a similar successful outcome.