I was having trouble finding the right words to honor Jack today, his 18th birthday. I sat at the computer last night, Googling “18” – looking desperately for some inspiration. Jack’s episode of Tosh.O was over, and he wandered into the office to tap me on the shoulder and randomly hit the keys on the computer to get my attention. I sat him next to me, “Come on Jack. Help me find something fun to write about.”

As if on cue, I saw what I needed. One Direction has a song called “18”.

Jack has awesome taste in music. It’s broad enough to appreciate The Grateful Dead, Bob Marley, even Miles Davis, but for years he has had a clear favorite that didn’t come from either of his parents – One Direction. When I saw that they had a song called “18”, I asked Jack if he knew it. My silent boy’s answer was unmistakeable. He popped off the chair and started hopping like a madman.

The song is basically a love song, but the first couple lines captured who Jack was, is and will always be.

“I got a heart and I got a soul
Believe me I will use them both”

We played “18” a dozen times and Jack never stopped hopping with a big broad smile filling his face. At one point he even managed to climb up on my desk chair. This is the same kid that can’t get himself into bed. When things happen spontaneously, ALD disappears for a brief moment. It’s pure magic.

So, THIS is also what ALD looks like. A boy dancing to a song he loves. Joy pouring out of every part of his being.

When Jack was born eighteen years ago, I never imagined his life would take this path. He has been turned upside-down and thrown in the ring again and again, but he never complains or feels sorry for himself. He just lives in the moment waiting for the next song.

It’s not a typical 18th birthday – it’s covered with scars of ALD – but we still have a whole lot to celebrate and we will. We plan to play a whole lot of One Direction today (and maybe a little Grateful Dead and Miles Davis too).

I would love for everyone who reads this to send a brief note to Jack on his Sweet 18. Here on the blog, or on Facebook or jctorrey@mac.com.

Love, Jess (proud mom of an adult – akkkkkk!)