Jake's Journey with Apraxia

And the Friends We Met Along the Way

Our family recently returned from a spring break vacation to the sunny, 75-degree coast of Florida. Jake is now seven years old and for the first time since he was born, we had a “normal” beach experience.

I looked at my husband that first day, toes in the sand, reclined back in a beach chair and said, “This is a blessing. You realize that, right? When’s the last time we were able to just chill at the beach?”

He responded with a laugh. “Ten years maybe?”

In Jake’s first year of life, he was a mess of eczema and would break out in splotches any time the sun hit his sweet baby skin. From age two to three, he was plagued with apraxia and sensory issues; the feel of gritty sand on his feet would send him into hysterics. For the past couple of years, the sensory issues dissolved, but a quick dip in ocean water made him break out in itchy hives.

But here we were this year armed and ready with a new attack plan … a wet suit. Allergies, listen up! We are not giving up without a fight!

“Won’t people laugh at me?” Jake asked when we first sucked his body into it.

This moment reminded me of a scene with Sally Field and the young Forrest Gump. “Don’t ever let anybody tell you they’re better than you, Forrest. If God intended everybody to be the same, he’d have given us all braces on our legs.”

My version of this it’s-okay-to-be-different speech was, “Who cares if people laugh at you? It doesn’t matter what they think. And anyway, this is what surfers in California wear. You’re gonna look way cool.”

So, the first day at the beach my little dude strutted confidently across the beach, boogie board tucked under his arm, and was ready to get after that ocean.

And it was a huge success!

As I sat there on one of those rare perfect moments that we’re granted in this life, I thought about how being a parent teaches us so many things. A few jobs I’ve acquired are: nutritionist, teacher, allergist, and speech therapist. (And those are just the fancy titles! Diaper changer, nose wiper, and taxi driver are not nearly as glamorous!)

I think being the parent of a child who is different transforms us into a unique concoction of dedication, stubbornness, and creative thinking. It’s a skill we are forced to acquire for survival; a plan C, D, and E when plans A and B fail. And it’s fueled by that thing in our hearts called love and the desire to provide our child with the best things in life.

plan a

Signs that say “trick or treat” at Halloween, hunting down a sign language speaking Santa, hand cues that make the words come out by taking a different pathway in the brain, selling a school system on why a child needs more than one group session of speech therapy per week. Figuring out how a child with sensory or attention issues can best learn in the classroom. Using an AAC device if the words just won’t come.

We are all at different places in this journey of apraxia, etc., but this is something as moms and dads we have in common. Victories aren’t always rewarded with a perfect day at a beach, but each one is still special.

On that day, I took a moment to reflect on the wisdom I’ve gained from parenting a special child. Patience, a quiet heart that is learning to be content with the portion that is given, courage to speak up when necessary, outside-the-box thinking, and gratitude and joy for the little things in life that many people take for granted.

And as Kenny Chesney says in the song, that’s “The Good Stuff.”

 

 

 

 

 

 

 

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2 thoughts on “The Good Stuff

  1. milleraj21 says:

    I loved this post, Tori. It is so true – our little ones who work so hard and take us on these unexpected detours in life teach us so much. I’m so glad we’re cyber friends and hope we get to meet “IRL” someday. ❤️

  2. Yvonne says:

    I love this post!! You are such an incredible mom & such an inspiration to all the moms out there having to deal with Apraxia. Thank you so much for sharing your journey!

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