Thank yous and big news.

Jack would like to thank everyone for all of his birthday wishes. He had an amazing day and, in typical Torrey style, he’s planning on celebrating all month!!





We’ve had other exciting news here on Clinton Avenue and I’m finally ready to share it. Drum roll please . . .

Smiles and Duct Tape THE BOOK is going to be released this fall. I’ve been working on the project for over five years and I can’t believe that the finish-line is approaching. I received my edits from the publisher last week and we’re busy sorting out the details about the cover art. Holy smokes – this is really happening! I’m honored and excited and a whole lot of scared.

What happens when your world falls apart? Do you simply lay down and take the blows, or do you try to figure out a new way of living? When our son, Jack, was first diagnosed with a rare disease, I wasn’t sure that our family would survive. And, once we realized that life would never return to “normal”, I questioned if it was realistic to strive for ever really being happy again. It took us a while, but thanks to the help of our friends, family, doctors, teachers, neighbors, and a lot of smiles, we managed to mend our family. It’s like we’re held together with duct tape – not pretty, but super strong.

We don’t have the release date yet, but I’m hoping that everyone will have a great go-to gift idea for the holidays. Who doesn’t want a memoir about a ALD family for the holidays?

Love, Jess



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!)




This is what ALD looks like.

I remember the first time Jack climbed out of his crib. I woke up to his little cherub face against mine saying, “Mommy, wake up!”

How could my two- year-old have managed to climb out of the crib? I marched Jack into his room and had him show me. I put him in his crib and, proud as could be, he lifted his leg over the rail, balance elegantly on the top bar and eased himself down. He hopped to the floor and clapped his hands. My handsome little monkey.


Flash forward 16 years.

We’ve recently purchased a new camera for Jack’s room. It alerts me every time there’s movement. I tracked it intently for a bit while we were starting a new medication, but eventually I turned off the volume. He was sleeping better and I would still check the history in the morning, but there was no need for me to miss out on beauty sleep for every roll over.

I sure wish that my volume had been turned on Sunday night.

Dan went into Jack’s room Monday morning to let Keegan out, and found Jack walking around his room. When Dan told me this news, I felt a pit in my stomach wondering just how long Jack had been awake. I grabbed my phone to check the history on his camera.

Two and a half hours.

The side rail on Jack’s bed had fallen down at 3:14 am. Jack caught himself before falling off the bed at 3:57 am – he was suddenly awake and on his feet. The video shows him looking at his bed, but he couldn’t figure out what to do, so he walked around his little room until 6:22 am when Dan came in the door.

They say knowledge is power, but sometimes it just breaks your heart. I hate this F#$%ing camera!

I was chatting with a girlfriend this morning telling her how upset I was, “Poor JackO was roaming. Just roaming around. His bed rail had fallen down, he had gotten out of bed and he was just wandering around his room.”

“Was he playing a game?”

“No. Just walking around. Jack doesn’t play games. He can’t.”

“He couldn’t call out to you – make some sort of sound?”

“No. Jack can’t make noise on demand. He can only cough and sneeze and laugh – and those thing needs to come naturally. Other than that he doesn’t make a sound. Even when he cries, it’s silent.”

She was trying so hard to make me feel better, “Don’t worry, if he’d been really tired he would have gotten back in bed.”

This is a friend who has known Jack for his entire life, but even she doesn’t get it. Once up, Jack can’t manage a simple task like getting back on a bed and laying down. I don’t blame my friend. It’s hard to imagine the same teenager that can understand her inappropriate sense of humor, can’t manage something a toddler could do easily.

ALD is strange in it’s choices of what it steals. For every boy it’s a little different, but the disease does have it’s preferences. While many boys lose their ability to hear and see and walk (Jack is lucky), what ALD always manages to do is to create confusion. It’s like static in the brain that get’s stronger the more the boys try to accomplish something. Any tasks that take more than one simple step often cannot be completed. Getting into bed sounds so simple, but for a boy like Jack it’s not – walking over to the bed, sitting down safely, lifting his legs to put them on the bed, and laying down. This is something Jack just can’t do on his own. The two-year-old who could climb out of his crib is now an eighteen-year-old (almost) who get’s stuck.

This is what ALD looks like.

Love, Jess

(The volume on the camera is back on)


ALD didn’t steal Jack’s smile.