What You Don't See in This Picture of My Son With Apraxia

There are so many things you don’t see in this picture at the right.

What you do see is an exuberant boy. He looks like he doesn’t have a care in the world. He looks like he is the life of the party. He is light, happy, joyful, playful and quite handsome (wink).

You might also think, “Wow, I wish I were in Hawaii right now.” (Sorry about that. We were lucky to be able to go to Maui for a family reunion this summer.)

If you look harder, you might see a kid who doesn’t like to have his haircut, so it’s a little uneven. You might wonder why his lei is crooked (He’s forever in motion, never stopping for a photo.) You might notice a wrinkly shirt, despite Mom’s best attempts at ironing.

What you don’t see is kidney failure at 3 weeks old.

You don’t see his tiny infant body writhing in pain from IVs, catheters and life-saving medication being pushed into his veins. You don’t see the heart monitor showing a near-fatal rhythm. You don’t see his parents’ desperation — both doctors and both unable to fix their son. You don’t see me, cradling him, crying uncontrollably and praying for just one more chance. You don’t see the nurses and doctors standing reverently still while the chaplain quickly baptizes him with another prayer.  

You don’t see the pain of multiple surgeries. Multiple second opinions from around the country. A child with drainage tubes hanging out of his lower abdomen, and the impossible task of changing a poopy diaper while trying to keep the tubes clean. The agony of trying to make the best medical decisions for this boy, despite there being no single best option for a rare condition.

You don’t see the intensive therapies. Swallowing and feeding therapy. Oral motor therapy. Craniosacral therapy. Occupational therapy. Physical therapy. Speech therapy. Early intervention therapy. The worry over not enough therapy. Not good enough therapy. Too much therapy. Changing therapists. The cries and protests from my son about therapy. The meltdowns before, during and after therapy. Our collective exhaustion over every … single … therapy.

Something else you might not see in this picture is this boy’s stubbornness. His determination. His grit. He has worked so hard to get physically strong, which you might glance over in this picture. You don’t see how hard it is for his brain to develop the right motor plans to overcome his apraxia. You don’t see the struggle every time he opens his mouth to put the pieces together.

You also can’t see how greatly this boy has impacted his family. We all feel such deep pride and happiness that he is part of us. We have shared in all the hurdles and all the successes. We have become individually more compassionate, more aware and more inclusive. Honestly, I think he has taught us more than we have taught him.

I’m glad you see the happy boy that he is. Because overall, he’s more than his diagnoses, his therapies, his challenges and his past. He’s a strong, courageous, fun, sensitive and beautiful child who I wanted to honor with this amazing picture. A picture is indeed worth a thousand words. Or at least 500 words, anyway!

Photo credit: BellaEva Photography