Today is Apraxia Awareness Day. Today I raise my voice to advocate for Jackson and all the other kids with Childhood Apraxia of Speech (CAS). Today I educate other’s about the speech disorder that steals the voices of so many kiddos; our little guy included.
We’ve been on this journey since Jackson started speech therapy at 18-months-old. I’ve definitely learned a few things along the way; both beautiful and gut-wrenching lessons.
This journey has been filled with joy and pain; hope and fear; laughter and tears.
If I could sum up some of the lessons learned, here’s what they’d be:
Love Needs No Words
Love is those big brown eyes sparkling. It’s his pouty lips kissing mine. It’s his little arms wrapped tightly around my neck. These moments between me and my son are just as powerful as hearing those three little words fall from his lips.
I’ve never loved so fiercely. And by love, I mean learning to love more like Jesus intended me to. Loving Jackson for who he is and not who he could be. It’s a love that doesn’t give up; but pushes past what seems impossible. It’s hugs and kisses and snuggles; but also heartache, challenges, and pain. It’s walking through fire; being refined; stripped of selfish pride. This love is fierce; daily changing me to be a little more like Him.
Every Word is a Miracle
A child with Apraxia must hear a word approximately 3,000 times before it becomes part of their vocabulary. Our life has been a constant game of repeat and we are finally seeing the fruits of our labor. In the past year Jackson has made incredible progress. He’s talking up a storm and with each new word, we celebrate! Hearing his voice never gets old!
Nobody Else Will Be His Voice
I’m sure people get sick of my Facebook posts about our journey. I’m certain I’ve lost friends and turned off family members because of my constant updates about Jackson’s progress. But it’s my job to raise awareness and educate others about Apraxia. There are so many people who have never heard of the speech disorder. I have to speak up for Jackson until he can speak up for himself. Because I’ve learned the hard way that nobody else will.
God Does Give Us More Than We Can Handle
Many people say God doesn’t give us more than we can handle, but I don’t believe that anymore. Sometimes he has to give us more than we can handle; because it’s the only way we will fully rely on Him. And His grace is waiting to meet us in those hard places; in all our inadequacies.
2nd Corinthians 12:9-10 says: My grace is all you need. My power works best in weakness. So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
I Speak A Second Language
Recently Jackson was saying something that John couldn’t understand. I was able to translate for John, which surprised him. I told him the next time someone asks if I speak a second language I’m going to say yes. I speak Apraxic.
All Therapists Are Not Created Equal
We’ve had our fair share and we’ve had a few doozies. But we’ve had a few that just can’t be duplicated. The kind of therapists who only come around once in a lifetime. The kind who still advocate for Jackson even though he’s no longer on their case load. They text to see how he’s doing. They text encouraging news and celebrate with us. They see the heart of my son – past the meltdowns to the miracles.
Grief Is Not A One Time Thing
One of the most difficult parts of the special needs journey is grieving the life you thought you would have. And that grief isn’t a one time thing. It can hit you at the most random times. Life doesn’t go as planned after a diagnosis. This Apraxia journey is a roller coaster ride. There are days I feel strong and capable; Jackson’s biggest advocate. Other days I question my ability to get it right. I’ve learned to embrace every day as it comes.
There Is Hope
Even on the hardest days I hope. I cling to Psalm 71:14 which says, as for me I will always have hope; I will praise you more and more. There is hope in Jackson’s smile. There’s hope in his eyes. There’s joy unspeakable in a little boy still learning to speak. Hope is hearing him say his name and the giggles that follow. Hope is there; even on the hardest days.