Guess who is 18!

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

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




11 thoughts on “Guess who is 18!

  1. Happy Birthday, Jack! You bring so much joy and purpose to your beautiful mother who is so bright and talented and shares “you” with the rest of us! Hope your day is as amazing as you are!


  2. Jack , You rock the birthday hat! Your smile shows your full of 💙 And🎼 (Soul) 😍😎👍🎉 Happy 18th!!

    Trish Flanagan


  3. We haven’t met, Jack, but I love your mother’s blog – and your taste in music! – and I wanted to wish you a very Happy 18th birthday!!!


  4. Read your blogs through a family relative in US who shares them. Love hearing about Jack! He and you are an inspiration to us all!


  5. Dear Jack. We’ve met 3 times. The first we listened to music on Block Island and I sang to you. I grew up singing and since becoming an adult and choosing a different path – I hardly ever sing to “strangers” anymore. Or ever. Just my kids who are sick of it! 😉 But you brought that out in me. I trusted you because you trusted me! Your parents must be so proud of you. Happy birthday! The Story of my Life is my favorite song by One Direction btw! Love, Mary Callahan


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