Daily Archives: May 30, 2019

THIS is (our) ALD

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After writing the sweet birthday story about Jack CLICK HERE IF YOU MISSED IT, I got started on our morning routine. Getting Jack up and out for school takes 2000 steps – even in the new house. There’s laundry and showering and teeth brushing and dressing and breakfast and medication. By the time we’re done with medication, we’re close to the finish line. The last steps are putting on his shoes (Jack wears AFOs so it takes some time) and few minutes on the potty – just in case.

I hadn’t realized that Jack had the last bite of cake in his mouth when I sat him down on the toilet (don’t judge – it’s his birthday). I left the room for a minute to grab some coffee and I heard a loud sneeze. When I walked back into the bathroom, there was chocolate cake EVERYWHERE. All over Jack, the floor, even the freshly painted, super cool and modern, white walls.

At first, there was a bunch of swearing on my part, but it quickly turned to laughter and joking with Jack that if someone hadn’t known what had happened, they might think it was poop. Several Clorox wipes and a new tee-shirt later, Jack and the bathroom were as good as new. I decided that – just in case – I would leave Jack on the toilet for just a few more minutes. The phone rang so I left the room and spent a couple of minutes chatting with Dan about the birthday boy. As I walked back into the bathroom I interrupted Dan by saying, “Holy crap. There’s sh%t everywhere!! Gotta go.”

This time there was poop everywhere. POOP EVERYWHERE!

When I cleaned up for the second round of mess, I can’t say that it was all laughter, but once I was finished, I called Dan back and we all found the humor when I said, “I just cleaned him up again. He still has some stuff on his pants. Not quite sure if it’s poop or cake. The bus just pulled up, so let’s assume that it’s cake.”

Is it poop or is it cake? Let’s assume it’s cake. THAT is real story of (our) ALD.

Love, Jess

side rails, alarms and a birthday

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Yesterday I woke up to a tap on the arm. I was confused before I opened my eyes. Why was Dan back home – he’d left so early? Then I heard the hop hop as my human alarm walked away.

I wondered how long it would take for our boy to figure out how to climb out of his new bed. Just less than a month isn’t bad. We’ve been living this life for twelve years now and a month is remarkably quick for learning a new skill. Not that I’m assuming that Jack will manage this new trick again for a while, but I ordered some side rails for his bed, just in case. 

In our old house I worried about Jack climbing out of bed and falling down the stairs. Now I worry about Jack roaming around the house unattended and God forbid escaping and finding his way into the pool. Progress can be complicated at our house – wherever it is. I’m so proud when Jack accomplishes a new goal, but each improvement can come with a list of worries.

Dan and Anna think I am nuts, but along with the side rails, I’ve recently installed an alarm system so that I can hear every time a door opens, cameras in Jack’s room and at the front and the back of the house and an alarm for the pool. Having a child with special needs can be complicated and expensive, but piece of mind is priceless.

Twelve years ago I never imagined that our family would look like this today. I was living in the “everything is going to go right back to normal” mode. I never thought I would secure our house — not from outside threats, but from our boy and things as simple as climbing out of a bed.

THIS is ALD.

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Today is Jack’s 12th Transplant Birthday. 4383 days since those cells from the “Little Lady from Detroit” (in case you missed our story 12 years ago – Jack’s stem cells came from a cord donation. All we know about the donor was she was born in Detroit in 2005. She needed a name, so we gave her one) saved Jack’s life. So much has happened since them. Loads of good, plenty of bad – but mostly good. Although we never imagined living this life, we have a lot to celebrate today. This year we are planning on celebrating big for his 21st “typical” birthday, so we told Jack we are keeping things tame today. Don’t tell him, but we did get him a few gifts. Just trying to figure out how to wrap those side rails.

Love, Jess

PLEASE send Jack a birthday note AND consider making a small donation to CPNJ Horizon High School in his name. His Wheeln n Walkin Challenge is tomorrow and we are only half way to our goal . CLICK HERE.