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.
smiles and duct tape 