Wednesday, June 10, 2009

When I'm awfully low

My son has officially been diagnosed with Apraxia. We've suspected it for awhile now, but the "yes...he definitely has it" was not something I wanted to hear. We have been hopeful that he would just grow into speaking. That one day, it would just click. I have heard the words numerous time, "my friend's son didn't say a word until he was 4 years old, so don't worry." Although others are comforting and hopeful, being told your child is behind is still awfully hard to bare.

Unfortunately, the only way he will truly be able to speak well is through rigorous speech therapy. Thankfully, we had help for him in Seattle and now we have a wonderful program that he goes to here 2x a week. I have seen him grow more these past few months than ever before. And yet, it doesn't feel like enough.

We had friends and their children visit us this past weekend. It was wonderful and hard. Wonderful because we love them. Hard because being with them 24/7 made it so apparent to me how behind my son actually is. With their very talkative daughter, only 6 months older than him, she found herself drawn to my oldest child instead of the one closest to her age. She could be reasoned with. She could be quieted down. She could talk. I do realize that part of this was simply her sweet nature. She is a girl. He is a boy. A rough, strong, energetic, tough little boy. And with that boy-ish nature; discipline, speech, and reasoning is guaranteed to be different.

And yet, it still made me sad. Sad that so many people can't understand him. Sad that he's so far behind (a year). Sad that I always have to explain to others why he is the way he is.

But on those sad days I try to quickly remember the good. How far he has come and how far I know he will go. The good is definitely plentiful because he is an amazing little boy. So sweet, so caring, so full of laughter and life. In fact,

-He sang his bedtime song for the first time last month. Twinkle Twinkle Little Star. It was loud and awkward and completely wonderful to hear. He now sings every song with me!
-He apologized last week. That was HUGE.
-He can say his own name. It was TIE forever because he could never make the K sound.
-He does so well in speech therapy. I watch his session on tv in another room and without fail, every time, I bawl my eyes out. He's a wiggly worm, but he does well and I hear new words and sounds said correctly each day.

Each night I snuggle in bed with him while we do our bedtime routine. We sing, we laugh, we hug. We talk just a little.

And I love who he is. And that's enough.

Some day, when I'm awfully low,
When the world is cold,
I will feel a glow just thinking of you...
And the way you look tonight.

Yes you're lovely,
with your smile so warm
And your cheeks so soft,
There is nothing for me but to love you,
And the way you look tonight.

With each word your tenderness grows,
Tearing my fear apart...
And that laugh that wrinkles your nose,
It touches my foolish heart.

Lovely... Never, ever change.
Keep that breathless charm.
Won't you please arrange it?
'Cause I love you ...
Just the way you look tonight.

Mm, Mm, Mm, Mm,
Just the way you look... tonight.


Rachel said...

Oh, I'm sorry you ever had to hear those words! At the same time, so glad you have a name for your worries and a plan for how to help your sweet boy.

Warner's said...

Carrie, Payton and I will pray for Kai every night. He'll be just fine! I know it! You're his mom for heaven's sake!

Pittman Four said...
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Kristie and Ryan said...

Oh carrie, I am crying. Kai is a bright, adorable little boy and he'll grow up and lead a beautiful life, because you are his mom.

p.s. what a blessing that we live in a time when such things can be diagnosed and treated! therapy is such a gift.

wilkinson_fam said...

Oh dear girl. As one who spent many of my childhood years in speech therapy, I have to remind you there is hope. Though I did not share the same diagnosis as your son, I was understandable to only my family until my mid-elementary school years. And yet, the Lord led my mother to avenues of therapy (in my case, music) that blessed my life forever. Who knew I would eventually go to college on music scholarships as a vocalist? All I can say is that the Lord leads and you AND Kai will not be alone.

Love you, friend. You have been prepared to do this. And do it well you will.

J.L Schofield, Independent Scentsy Consultant said...

Carrie, We love you guys. We are happy you have found a great program for him and that he is speaking more and more. He is a sweetie.
Rick & J.L

Erin said...

hey...a growl can communicate just as much love as the actual word. don't worry carrie. he is so strong! as are you! you'll both get there.

Pittman Four said...
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Regina said...

Carrie, I'm too sorry that you, Aaron and all the family have to hear this. I do understand. We've heard similar dx, as you well know, in our family. You and Aaron are strong and you will deal with this just like you have had to deal with many other issues. He's a darling child and will be loved no matter. Hang in there!

Annette said...

Found you through the apraxia board at BBC...bc my 2 1/2 has apraxia too.

Even when we just suspected it, it was hard to read about. But then I cou;dn't get enough info...and support. Blogging is great for sharing progress too. I really pray that by the time Meghan is 3 1/2 she can sing, too!

Feel free to email me or just leave a comment on my blog or BBC.

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