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.

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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)

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ALD didn’t steal Jack’s smile.

 

6 thoughts on “This is what ALD looks like.

    • It’s been bothering me for days, but once I wrote it down I was able to (pretty much) let it go. I promise I am not in a puddle of depression, just a little sad when the reality of his disease is clearly shown to me. This time it was on video. Your hair looks so pretty Liza. THAT makes me smile;)

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  1. My heart too is breaking for you and what you endure on a daily basis. We are starting to see some of that confusion in Sean lately. While Sean is more able bodied and does not require as much supervision as Jack we understand. Sean has short term memory loss and fine motor skills (we dress him ect.) He is totally overwhelmed when outside our house and among people. I stood 2 ft. off to the side of him and it took him almost 5mins to find me. He will not sleep in his bed anymore as he is terrified of having a seizure even though it has been over a year. While Sean is vocal and very much so, he lets us know each day lately that we ruined his life (memory loss ect.) and wished he never had a Transplant. Hopefully this is just a phase and he will let up on making us feel guilty (we sat and explained that he would not be here or would be living like his brother if BMT was not done). You are right this beast is just horrible and never lets up.

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    • Ellen – You are such an amazing mother and remember that Sean just doesn’t understand the choice you all had to make. He is mad at the disease, not at you. ALD is sneaky and evil. Stay strong and know that you can reach out any time to chat/bitch/yell/scream. I am here (often chatting/bitching/yelling and screaming).

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  2. Sorry this is late but HAPPY BIRTHDAY JACK!!! And CONGRATS Jess on the book release that is so exciting! I know it was hard work but I know for myself and going through the rare disease journey with our Hero I was so thankful for the written word…I am so glad that you can share your journey and your beautiful boy with the world! Love you guys. Hope the end of the summer is beautiful…

    the Murray family

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