When we got the diagnosis that Viola was a Little Person I remember feeling really hopeful for her future. I knew things wouldn’t be easy for her but this girl’s spirit is something to be admired. When we got the diagnosis of mild/moderate hearing loss I was worried but optimistic. We would be able to get her a hearing aid if she needed one (she didn’t) or tubes to help improve her hearing (she did). Then a few weeks ago our speech therapist suggested an additional diagnosis.
Childhood Apraxia of Speech.
And I still feel hopeful and optimistic and all of those things. But I feel a little weary for her. Because I just feel like maybe she deserves a smaller mountain to climb.
Childhood Apraxia of Speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech.
How this looks in our daily life is that she struggles to say any words on command. And she struggles to imitate sounds. She wants to. She looks at me and tries and tries and tries to tell me something but it comes out completely different than any word she’s trying to say.
For example, yesterday we were doing our speech homework. The goal was to get her to say the long A sound. “Aaaaa” I said. She set her eyes on my mouth to study it and forced out “Mmmm.”
At 26 months she isn’t saying much more than 5-6 words. Most all of those words are exclamations. Words she says spontaneously. Nothing much on command. “Uh-Oh!” “Oh Dear!” and now that we have kittens to chase around, “Meeeooow.” But not much else consistently. She knows lots of signs. She follows directions. And she can communicate non-verbally in a really effective matter.
We’ve seen lots of experts and therapists. And a Naturopathic doctor or two as well. And we are working to make progress. We’re doing some really intensive speech therapy right now. And taking probiotics and vitamin B-12 and cod liver oil supplements. And using essential oils. And pretty much any other thing I can think of to help her.
Maybe the thing I’m learning most in all of this is that Viola’s journey is just that – her journey. I can try and help her. I can be there for her but the truth is she is going to be climbing this mountain and there isn’t much I can do to fix things for her. That is true for all of my kids. It just took Viola to make me see it.
Lately I worry a lot about everyone. The more struggle I see my kids having the more I realize how limited my ability is to make life easier for them. I’ve been praying for wisdom and for patience and for healing. And I think I’m getting it. Just not always in the way I want to.
I want God to give me the wisdom to know how to “fix” Viola’s challenges. He’s giving me the wisdom to see that He created her (and all my kids) for a special purpose. And they don’t need to be fixed.
I want God to give me the patience to help her through this. He’s giving me the patience to wait on Him and to recognize that life may look differently for her than I had planned but that it is okay.
I want God to heal her of her motor speech disorder. He’s healing my mama’s heart of the fear I have for my children’s future.
This world is a scary place. Whether you’re average height or small. Whether you speak or whether you communicate by other means. And I’m being reminded daily that I am not the one driving this train. I have to trust more than I think I am able to sometimes. But trust feels like a rubber band. Just when I feel like I am going to break from the waiting and the trusting my rubber band stretches and I find myself capable of trusting more. God is here for me as much now as He ever has been. I’m just learning to rely on Him more. I’m seeing His provision more. I’m thanking Him more for the little things.
One of the things we talked about in my therapy recently was the idea of emotions being bad. If you had asked me 6 months ago which emotions were “bad” emotions I would say: sadness, worry, anger, fear, envy…and a whole host of other not so fun feelings. What I am learning is that these feelings are uncomfortable. And I mean, really, really uncomfortable. But so is growing. And that doesn’t mean its a bad thing.
It sounds pretty basic. After discussing this with my kids it seems like they already knew feelings weren’t bad. So I guess I’m a little late to the party. When I realized it was okay to feel sad or disappointed or angry at things it freed me up to see what these feelings were teaching me. I’m focusing on riding the waves of these emotions without letting them drown me. It’s been healing to have this change of perspective.
Tomorrow I am going to get up and get ready to surf the waves of emotions that come from being a mom to five kids (one with needs that are a little different from the rest). I’m going to exercise patience and trust. And I’m going to love and love and love and love.
Because, in the end, love is everything I have to give to my kids. And I’m trusting in that to be enough.