the labyrinth


Just getting home from Block Island. It was a quiet stay this year and we loved having solo time with PopPop and Sue and getting to spend time just the four of us. Have I mentioned that Anna is leaving for college soon?

On our second day we went to Block Island’s Labyrinth. There was something about quietly walking a labyrinth that seemed like the perfect activity for our family as we prepare for a ton of change. Years ago I photographed a labyrinth for a local paper. I Googled the word before I left for the shoot, not really understanding the particulars of the definition. The three stages of the walk are releasing, receiving and returning. As you follow the path within, you are to shed your thoughts, quiet your mind and open your heart. While at the center, you meditate or pray, allowing yourself to receive guidance. Then you follow the same path out, thinking more clearly and feeling empowered. The whole thing sounded kinda cheesy, but after the shoot, I gave it a try and I found it more powerful than I’d expected. I felt calm and at peace. Last week I was looking for some calm and peace and wanted to share the experience with my family.

I encouraged them to take it seriously, “No talking. Just walk. Take it all in. Follow the path and let your thoughts wander.”


Knowing I’m a little fragile these days, my family hid their rolling eyes and agreed. Anna led the way, trying to help her brother along. It was quiet and beautiful. There are no decisions to be made when walking a labyrinth. It winds around, but there is only one way in and you follow the same path out. A needed departure from the endless decisions we make every day. One step at a time we all moved forward. Within a minute, Jack got distracted, let go of his sister’s hand and started making his own path. I laughed at the image of Dan, Anna and I staying the course as our boy did his own thing. Very much our family, no matter the circumstances. We all stayed silent and I started to really get into it – I felt more relaxed than I had in a long time, enjoying the rhythm of my steps on the sandy path.

Half-way through, the spell was abruptly broken. Dan yelled, “Crap – Jack STOPPPPP!”

I looked up and saw Dad run after Jack as he bolted down the hill toward the street. Just a few moments of no one watching and he had managed to plan an escape. Block Island is not known for it’s traffic, but Jack heading to Corn Neck Road without assistance was enough to have us all in a panic. I imagined a pile of mopeds piled up on our boy.

Just when you think everything is perfect, Jack likes to shake things up for us.

Thank goodness for the stone wall at the end of the path. Jack reached the bottom of the path in record time, but took one look at the wall and the ladder to climb to the other side and gave up his plan. Too much work for our boy. He turned around to the arms of his dad. He and Dan walked back up the hill with his mischievous smile telling us all he knew exactly what he was doing. The boys watched from a stone bench as their girls finished up the Labyrinth. Jack had given us all a little detour from our relaxation, but our family is used to detours.

Love, Jess

We drop off Banana tomorrow. Just another detour;)


a love letter to CPNJ Horizon High School


One of the highlights of my weekdays is when Jack’s bus pulls away.

It’s not that I don’t adore my boy, it’s just that I love letting go of my responsibilities and I know that Jack is off to have another great day at his school.

Jack’s been at CPNJ Horizon High School for five years and there hasn’t been a day since he started that I haven’t counted my blessings for finding that school.

The PG Chambers School was a hard void to fill. Not only had Jack received a great special education there, but they were there for our family as we came to terms with the fact that Jack’s disabilities were not going to magically dissolve. They held us up for years as we reached a place of acceptance.

When we were faced with finding a new placement for Jack, I was basket-case. I’d just wrapped my brain around being a special mom with a child, and suddenly I was walking into schools filled with young women and men with profound disabilities. It was a population that I didn’t know and it was overwhelming. Everything was bigger – bigger kids, bigger equipment, bigger changing tables.

Thankfully, the positive energy at the school quickly won us over. CPNJ Horizon High School is an incredible place.

Like a typical high school, Jack and his peers switch classrooms throughout the day – science, math, world languages, history, art, gym, yoga, karate. They learn everything from simple cooking and using household appliances like washing machines, to practicing making beds (Jack has yet to attempt those last few things at home, but maybe he will surprise me on Mother’s Day). When the kids are not in a classroom, you might find them out in the garden watering their veggies or on their adaptive playground or hanging out in the sensory room or maybe in the pool getting therapy (it’s been a while for JackO – they have a “3 strikes/you’re out” policy. You can guess what’s considered a “strike”;). There’s also a school store where Jack’s peers sell tasty snacks and clothing made by the students. Jack and his classmates also receive all the necessary physical therapy, speech therapy and occupational therapy seamlessly within their school day.

That’s just a typical day at CPNJ Horizon High School. Special days pop up often and Jack LOVES every second of these days. Each year CPNJ Horizon High School produces a play – filled with student actors — wheel chairs/walkers/speaking devices – nothing stops these kids. There are also costume parties, dance parties, sports days, movie days, even prom – that’s next Friday and I promise to share photos.

The greatest thing about the school isn’t really all of the activities, it’s the people behind the activities. The students are the stars, but it’s also the teachers, therapists, aids, nurses, custodial staff, cafeteria staff, administration. You walk into the school and it’s like walking into Disney World. It’s clean and beautiful and everyone has a smile on their face and a warm greeting at the ready. It’s a place where I am known simply as “Jack’s mom” and I answer to it easily.

So, when that bus pulls away each morning, my smile is not just about me being able to enjoy a few hours without diapers or medicine or responsibility. It’s about knowing that my boy is going to enjoy a great day. Thank you CPNJ Horizon High School. I love you;)

Love, Jess

If you would like to support Jack and his wonderful school, their annual Wheelin N Walkin Challenge is coming up soon. Every class walks/wheels proudly sharing their class banner. It’s a beautiful site to see. It also happens to be a fundraiser . . .


I need to keep an eye on Dan

My husband is a cheater. I really think he has been hiding this from me for at least a week. I noticed the little smirk on his face every time I mentioned it, but he kept telling me that I was crazy and just needed to work a little harder.

Then this morning, while he was in the shower, I checked his cell phone. I found the app and I hit “sync”. I had my proof and I stormed into the bathroom, “What did you DO last night Dan?”

He peeked out from the glass shower door with a funny expression, “Jess, I was home before 11:00. You were sound asleep.”

“If you were asleep before mid-night how did you already get 1550 steps today!”

Generally, I am not very competitive. I’ve had my Fitbit for two years and I’m usually more than content reaching my 10,000 steps a day (about 5 miles). It means I’ve walked the dogs enough to keep them healthy and moved my body enough to fit in my mom jeans. Occasionally, I do except a “challenge” (where you compete with other Fitbiters), but only with people who are 10,000 steps a day folks – I don’t really want a “challenge”, just enough motivation to walk extra mile or two.

Last week I found Anna’s rarely used Fitbit and told Dan he should give it a shot. He gets frustrated by his lack of time to exercise during the week. I thought tracking his steps might be interesting to see how much he’s really moving during the day. I also wanted him to see what an active wife he has — no bonbons and relaxing for me;-)

I downloaded the phone app, set up the Fitbit and showed Dan how to use it. “And, I set us up for a challenge. Won’t it be fun?!”

Last week he beat me by five miles. It nearly killed me, but I rationalized that his commute was good for a couple of miles a day and he had a ton of meetings last week. The weather had cooperated enough for him to walk from meeting to meeting. THAT would never happen again.

This week I set up my schedule so that I could walk two times a day. I added some other “friends” to the challenge and was ready to show everyone that Jesse is the Walking Queen. No luck. No matter how many steps I took, Dan was ahead of me. I asked him repeatably if he’d check to see if his Fitbit was working and he made me feel like I was being silly.

This morning after our confrontation in the bathroom, Dan started getting dressed. He was teasing me about being paranoid, and I was starting to feel rather foolish. Then I looked down at his phone and realized that he had just earned 79 steps by putting on his tie.

I don’t just want to be Jack and Anna’s mom, Dan’s wife, an art teacher, a writer, a pharmacist, a driver, a model (don’t laugh — long story) — I WANT TO BE THE WALKING QUEEN (at least at 26 Clinton Ave. – my other “friends” are beating me too)!! I made Dan switch arms to see if we can get on an even playing field. We are going away this weekend and I’m going to keep a keen eye on my man. No funny business Dan!

Love, Jess


hop, hop, step, hop, step, hop, hop, hop


Watching them walk the Greenway I can’t help but think back over the countless steps that my boys have made on this very trail. Hiking has always been something they’ve done together. Until this year, Jack could go for hours and keep up with anyone. Now his pace is slow and difficult for whoever is helping him.

Hop, hop, step, hop, step, hop, hop, hop, step. Jack spends more time bouncing than moving forward. Sometimes it takes him a few minutes to move just a dozen yards. And, it’s not just on the trails. Getting him to the car can be difficult and taking him down the isles of a grocery store is becoming a marathon.

It’s been a few months since Jack introduced this new gait. At first we thought it was an extension of the Flamingo Dance and almost applauded it, but we quickly grew frustrated. It makes the simplest activities arduous and can quickly take the fun out of adventures. His therapists and teachers noticed it too and everyone has tried everything to get Jack’s steps to find their old rhythm. Weights on his ankles, weights on his hands, braces – nothing seems to be working.

Dan and I are trying to stay confident that there will be a simple resolve and we can go back to our old hiking days, but we’re starting to get concerned. Generally, Jack is doing quite well. Improvements have outweighed setbacks for years. We weren’t prepared for this. It’s frustrating and unsettling that we have a new issue that we can’t seem to easily fix. Like all of Jack’s complications, this new challenge is not easy or typical. ALD can cause brains to short circuit. Behaviors can quickly become habits that are difficult to reverse. We have a great team working on it, but I’m feeling like we’re bracing ourselves for the fact that this might be part of our “normal”. We really wanted to stop adding to our catalog of not so normal normals.

Added on top of frustration and worry, I find myself feeling guilty complaining about walking issues. At Jack’s school, wheelchairs are as common as backpacks. Jack’s mobility is something revered – even at it’s new, slow pace. It seems petty to whine about something that others covet. Frustration, worry, guilt – not a great blend of emotions for a summer day on Block Island.

Luckily Jack’s smile slaps me back to the reality and I remember that we have a lot to be thankful for. Besides occasional reminders that ALD still lingers, our month away has been wonderful. Time with friends and family, hours a day in the sand and surf, festive meals and beautiful sunsets. That walk/hop/bounce on the Greenway took 46 minutes and we only managed a half mile. We are off to the beach this afternoon. Who needs hiking?!?

Love, Jess