THIS is (our) ALD


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

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.



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. 

we’re home

Earlier this month I called one of my best friends and was hysterical. I’m not sure exactly what I said, but I remember hanging up the phone, walking though a pile of boxes and crawling into my bed. I saw her two days later and she told me that her husband had heard me melting through the receiver and said, “I’ve only heard Jess like that once before.”

Thirteen years ago we had just moved into a hospital, facing the biggest fight of our lives. I’m not saying that this move compares to that hell, but the overwhelming exhaustion is comparable. The physical work took it’s toll on this middle-age, non-athlete and the emotional component I found far more brutal than I’d prepared for. Sorting through memories and packing up boxes was just the beginning.

We chose to move because it was time – because Clinton Avenue didn’t make sense for our family anymore. Four stories of living was just too much for our boy. It was too much for me. Too many stairs, too much space between the master bedroom and Jack’s, too many walls to hide Jack from our vision. Our morning routine would have me up and down the steps countless times and during the bad weather it would often take me ten minutes to get Jack from our front door, down the stairs, through the path and onto the school bus. We knew we needed a change, but we couldn’t help but feel that ALD was stealing another thing from our family — our dream home.

When we started looking, we didn’t know if we’d find something that would fit our family AND compete with our beautiful, memory-filled Clinton Avenue. Even after we found this house that checked all our boxes, I would wake up during the night with my heart racing, thinking that we were making a huge mistake. Lack of sleep, physical exhaustion, packing up way too much stuff tucked away in every nook and cranny of a turn-of-the-century home — before the move actually happened, I was a basket case.

Then came the move. It ended up taking three days and once the moving truck left our driveway I went to take a shower and realized that it was my first shower in the new home (no, I hadn’t snuck one in anywhere else). The next morning one of the movers stopped by to follow-up. When he saw me clean with some mascara on, he said, “Wow. I didn’t recognize you.”

That was three weeks ago and finally Speir Drive is starting to feel like home. We’re getting used to the new routine and appreciating that it is easier. Right now I’m sitting on the sofa in the living room, with light pouring in from the skylights. Jack’s in his room just steps away watching That 70s Show (his new fav). The master bedroom is just beyond Jack’s room so when Dan and I wake up in the night, we can glance into his room without getting out of bed. The living space is all open, everything we need is on this level and when the bus arrives in the morning, we just open the door and there it is. No steps, no need for even an umbrella.

Banana has a beautiful room upstairs, where there are also a couple of guest rooms, and the house has a beautiful yard with a pool. It’s lovely – perfect for our family and perfect for entertaining. Dan doesn’t like it, but I’ve been describing the house as a mullet – all business in the front and a party in the back;)



We loved Clinton. It was our dream house that we managed to make perfect year by year. It was filled with memories and I credit it’s walls for holding us together through some of the most difficult times of our lives. It was hard to say good-bye,  but I’m starting to feel like Speir Drive is going to feel like our dream home too before long. The boxes are almost empty and we’re heating up that pool so that we can start diving into making some new memories.

Happy Memorial Day!

Love, Jess