Monthly Archives: August 2015

Rehabilitate the Gait can wait

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I’m not going to lie. When I wrote yesterday’s post I was feeling a little blue. I was wishing that I could just snap my fingers and have Jack bust out of his new, annoying habit. But then, we went to the beach and I noticed that his gait on the sand had more steps than hops. I credit the input of the sand against my “sensory sensitive” boy’s feet, but I also think that Jack knew his mama needed a break. We had a great day and a delicious dinner overlooking the ocean. By bedtime, I had safely returned to my “glass is half full” perspective.

And, the fact is, Jack is still walking. He is completely mobile, it just requires more assistance and a lot of patience to get him around. Our family has been spoiled. Although we needed to modify our activities to make them Jack friendly, we could navigate this new life with ease. Now, it takes a lot of time — and hops. Worrying about this new complication being permanent will not help. Besides, we’re on vacation. We can refocus on Rehabilitate the Gait in September.

Attempting to avoid reopening my can of worries, when we were planning today’s activities we kept away from anything requiring many steps. A bike ride seemed like the perfect solution. Jack on a bike may sound like an unusual choice, but we have a BuddyBike and a dad who has been working hard to build his muscles so that he can manage peddling his boy around the island.

If you wonder why we are able to stay positive even when worrying about new challenges – take a peek at this video. Life is pretty darn good. The Buddybike is part of our duct tape!

Love, Jess

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

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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

tiny, hairy, and perfect

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She is a gray shingled cottage with a blue door. Far smaller than our Maplewood center hall colonial, but each summer we fill her up and call her home for the month of August.

Two bedrooms and one bathroom is tight for our family of six. The dogs seem quite large when navigating around the space. And, Keegan’s hair can be considered an extra occupant, taking on a life of it’s own. Labs shed, and when contained within our small quarters, a thick layer of blond is added to everything within hours. Luckily, a benefit of a small home, it only takes a few minutes to pass the vacuum. It’s one of my only chores on Block Island.

The fridge is full of snacks and beverages and the closets are stacked with bathing suits, jeans and teeshirts. There’s always a puzzle in progress on the table and Anna has piles of summer homework littering the living room. I try to tidy up the mess, but it always looks a little chaotic. As we get into vacation mode, it bothers me less and less. On slow days, Dan often sets up a tent next to the clothes-line providing us an extra room, perfect for reading or taking an afternoon nap.

The number of guests in the cottage varies. With the exception of last summer (Dan’s magical Garden Leave), Dan is not able to come for the whole month. He dutifully goes back and forth on weekends from NJ to RI for the first two weeks. Anna opened it up further with her Outward Bound trip cutting into August. It allowed Jack, Keegan, Finn and I to have a few slow days of quiet and then Mymom (my mom) came for a visit. The following week Anna arrived with 3 of the 5 Mackays. The cottage was jumping as the amount of teenagers outnumbered the amount of old folks. Just yesterday, Anna’s friend, Natalie, arrived for her second time on Block Island. It’s great to have her here again, but Dan is now here full time and five humans gets a little tight. Thankfully, my in-laws are gracious enough to allow kids to stay in the bunk room. Five in the cottage might have just ripped the vacation mode right out of me.

The cottage is not the only house full of friends and family within the stone walls of the property. My in-laws have a house full from Memorial Day to Labor Day and we’ve gotten to overlap with tons of family. Their house is just steps away from the little cottage and it’s always full of commotion and energy. We head over for family dinners and too many cocktails on the deck. Such a treat to have some extra square footage and great family right next door.

A friend called last night and asked about our vacation, “How’s the cottage?”

I looked around the little cottage and smiled, “It’s tiny, hairy and perfect.”

Thank you PopPop and Sue for our August home.

Love, Jess

The Dancing Flamingo

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Those who have witnessed The Dancing Flamingo are always captivated. It’s not just unusual, it’s rather remarkable— considering the performer. For a child that can’t walk unassisted down a staircase (for fear of falling), I can’t explain how he manages a dance that requires so much flexibility, balance and coordination.

He starts by stretching tall. Getting so high on his toes that he looks like a ballerina. One leg suddenly bends (the knee goes higher than seems possible) and then he bounces. The dance is always paired with an electric smile and eyes that open wide and shine. The more excited he is, the higher the knee and the longer the dance. One Direction playing can set him into the routine within the first few beats of a song, and a visit from an old friend always gets him going – proving his memory is never at a loss. Anyone who has spent time with Jack since he choreographed his dance knows exactly what we’re talking about when we say, “The Dancing Flamingo”. There is no other suitable name.

On Tuesday evening, Anna arrived. As her and the Mackays (thanks for the visit and bringing her to us) pulled up the driveway, Jack was ushered from the cottage. He seemed excited, but when Anna got out of the car that leg bent higher than I’ve ever scene. And then he bounced and bounced as his sister ran up to hug him. Jack has been bouncing ever since.

Two weeks without our Banana was hard for all of us. One week at home going through the motions of real life and then a week here on beautiful Block Island. I thought that all the distractions of island living would soften the feeling that we were missing our family’s core, but it didn’t. Jack was definitely running a slower than usual and every time I mentioned Anna’s name he answered with question in his eyes.

When Anna arrived, she was full of so much love and so many stories. Outward Bound proved to be everything their web-site promised. I know that it’s time to start letting go of our girl, but our family is just too quiet without our heart. Now that she is back, I feel the blood flowing in our veins and we are ready to start our family vacation. I have a feeling we will be seeing a lot of our flamingo friend this summer.

Love, Jess