Tag Archives: special needs family

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

and she’s off!

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We were on our way to the airport. It was only 4:15 am. I had a cup of coffee in my right hand, the steering wheel in my left and my eyes fixed on the road – trying hard not to look at Anna. I’d promised her that I won’t cry until she was safely through security.

“How about socks? Do you have the right kind of socks?”

“Yup”

“A hat Anna. You’ll need a hat!”

“Mom, I packed everything on the list. Don’t worry.”

Most parents would have checked their daughter’s suitcase before sending her off for two weeks in the woods. Many moms would have even done the packing for their child. I’d never seen the packing list sent from Outward Bound or glanced at what Anna had in that red nylon duffle bag. I’ve been rather spoiled as a mother. Anna doesn’t require much hand holding. There’s never been a need to go through her homework or her suitcases.

Anna was born strong and independent, but I’d be a fool not to acknowledge that our family’s circumstances have strengthened Anna’s self-reliance. Independence has been a necessity for Anna. She was only six-years-old when Jack got diagnosed and her family scattered. Although we held to our promise that either Dan or I would always be home at night for her while Jack was in the hospital, we were so focused on what was happening in room 505 at Columbia Presbyterian, that Anna didn’t get much of our attention. Thanks to friends and family, she was surrounded by love and support that spring and summer, but she learned that she needed to take care of plenty on her own.

Now that we’ve taped our family back together, we’re so accustomed to her independence that Dan and I assume that Anna will manage the school/packing stuff without much help. And, she does.

Her room is nestled on the third floor of our house. When I climb those steep stairs to check on her, I’m always amazed at her nest. Like all teenagers, she has trouble finding the laundry basket and her bed never seems to be made, but her closet is organized and she has a large whiteboard calendar hanging above her desk where she lists everything she needs to accomplish for the next month. Her grades are a reflection of her hard work and organizational skills. Bioengineering is her goal, and I imagine that’s where she is headed. She’s the smartest person I know.

Although Anna doesn’t require much in the way of homework or packing help, she gets more than her share of love and attention at home. Even her silent brother gives her constant feedback (with those magical brown eyes and wide smile) about her school endeavors and successes on the lacrosse field. And, we all have opinions and advice when it comes to her social life — 11:00 pm is late enough and shirts should not be smaller than bathing suits.

Outward Bound sent us a note yesterday afternoon informing us that all of the campers had arrived safely. I smiled, when I noticed there was no mention of any missing necessities in our daughter’s luggage. As much as I miss our Banana, I’m certain that she woke up this morning with a smile on her face, ready to face the challenges of the next two weeks. Thank goodness she remembered the hat.

Anna sent me this before she hit the trail and her phone went into quarantine.

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a banana goes into the wild

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Anna leaves next week and I’m in a panic.

It’s not the first time that Anna has gone away to camp, but it’s the first time that we’ll likely not hear from her for two weeks. As parents we need to be willing to let go, but it’s hard for me. Our house is so quiet when Anna’s gone. People assume that Jack is the center of our family, but it’s really Anna who holds everything together. It’s her school projects and social life that are the main topics of dinner conversation. And, it’s her curfew that’s the main source of weekend arguments. When she’s gone, the laundry is cut in half and so is the energy at 26 Clinton Ave.

Dan and I agree that summer is time for adventure and Outward Bound caught Anna’s attention as soon as she opened their website. She leaves Tuesday to go backpacking and whitewater canoeing in the Blue Ridge Mountains of North Carolina for 14 days.

The idea of living outside for two weeks makes me shudder. Add to that the absence of toilets and showers, and I feel sick to my stomach. So why are we sending our precious Anna? Because she’s a Torrey. It’s in her blood.

Anna’s great, great grandfather, Raymond Hezekiah Torrey, was the founder of the NY/NJ Trail Conference and one of the original pioneers of The Appalachian Trail. He also wrote a weekly column for The New York Evening Post called Outings and The Long Brown Path. Anna’s grandfather, Raymond Joseph Torrey (PopPop), followed in his grandfather’s footsteps and completed The Appalachian Trail last year. As we celebrated this milestone (near the memorial for Raymond H. Torrey engraved on Long Mountain in Harriman State Park), I could see in Dan’s eyes that he longed to continue the family tradition. As soon as retirement starts, I’m sure the woods will call Dan. In the meantime, Anna will fill his shoes – not on the Long Brown Path, but in the beautiful Southern Appalachians.

Anna has seen a lot for a 15 year-old-girl and she understands more than most people twice her age. I hope this experience will add to her already broad assortment of accomplishments. We are all so proud of her. I know I’ll need to fake a smile when I drop her off at the airport next week. I will squeeze her a little too hard as I start counting the hours until we see her again. Then I will drive home and try to fill my days with projects. Thank goodness Block Island will keep us company for much of the time.

We will all miss you Banana, but are excited for you and can’t wait to hear the stories. And, if we get a few postcards, we might consider changing your curfew to 11:30.

Love, Mom

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the weather inside is frightful

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I hadn’t realized how hot the house had gotten until Dan got home and questioned why it was 89 degrees in our bedroom. I thought I was sweating because of all the adrenaline following the Blogher15 Conference. I checked the thermostat and sure enough, something was wrong.

A series of fiddles and phone calls and it was confirmed that the central air was indeed broken, “Sorry lady. Just turn it off and we’ll see you in the morning.”

I knew this news was not going to go over well, and struggled to keep a smile on my face.“Won’t it be fun to camp out in the basement? It’s nice and cool down there.”

I would love to share that my entire family was excited and happy with the situation. I can’t – we are a NORMAL family. There was a lot of storming around the house and dinner was completely silent (following the rule that if you can’t say anything nice, don’t say anything at all). We did manage to get the basement set up without killing each other and then discussed bed assignments. The original plan was that Dan and I would share the pull-out couch, Jack would take the blow-up bed and Anna would sleep on the floor. She’s heading to Outward Bound next week and it seemed like good practice.

An hour into our camping trip, I realized both of the children were still awake and I told Anna to take my spot. I would share a bed with Jack to try to calm him. Jack doesn’t have the ability to easily shut down for the night. He gets distracted and fidgety. Brain damage is strange. I spent the next several hours trying desperately to get Jack to go to sleep. Just when I would think he was out, he would sit up and attack me with his elbow, leg or his entire body. At one point, he fell asleep with his body folded completely over me. I was so tired that I just let it be and closed my eyes. When I woke up a couple of hours later, I realized that he had peed on me.

I know that more than one of you are saying to themselves, “Last time I hung out with Jess, I did notice that she pees an extraordinary amount . . . maybe . . . ”

It’s true. I am a pee-er (spelling?). I’ve been told my issues are a little gift from the ALD gene. Woman (generally) don’t develop major symptoms, but they do tend to receive an assortment of little reminders that the gene is lurking. I don’t have much to complain about. Some numbness in my feet and a bladder than doesn’t work perfectly. My Fitbit tells me I wake up 4-5 times a night and walk approximately 170 steps. During the day can be even worse. My family is accustomed to many unexpected stops while on the road.  Dan knows to ask, “Should I wait for the next rest stop or just pull over?“  – I always have a roll of toilet paper handy and my husband it a good man.

I do admit to my “issue”, but last night was all Jack. I still love the boy, but I don’t like being peed on.

Love, Jess

blogher15

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I have all these words swimming around my brain today – audience, organic, engagement, analytics, platform. I’m trying to quickly sort out everything I learned at the Blogher15 Conference before my brain returns to focusing on my usual words – laundry, diapers, groceries, medications, and reality television.

When my friend, Brooke Lefferts http://www.carpoolcandy.com, encouraged me to sign up for the conference, I was intimidated. Then I remembered that she had motivated me to audition for Listen to Your Mother and that seemed to go well, so I dove in.

Friday morning I boarded an early morning train with Brooke, our new friend, Christine Carlisle http://www.chewnibblenosh.com, and what seemed like thousands of commuters. We found our way to the NYC Hilton, signed in and were given our badges. I felt like an impostor, like at any moment I would be asked for proof of being a “real blogger”. Luckily, there was no security or verifying of site stats.

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I believe strongly that people laughing WITH me is far better than people laughing AT me, so I played the role of naive newbie as I stumbled around the conference. I did get more than one laugh referring THE Twitter and asking how one would find their “analytics”. Truthfully, I didn’t need to put on much of an act — I was out of my league. But what option did I have? There is no Blogher for Dummies. So, I laughed my way through the speeches and sessions and managed to get a ton out of the experience. I left the conference with a pile of knowledge, a huge amount of motivation and some new friends.

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Introductions are constant at any conference and this one was no exception. Cards were thrown around like confetti at every opportunity. I quickly learned that “parenting” is a very crowded space, so in an attempt to differentiate myself form the “twenty ways to pack a healthy lunch” category, I started to describe myself as a “special needs blogger”. That was greeted with sad faces, so I changed my approach. “I write about my family. How to have a normal family with a special child.” Positive, upbeat and honest.

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The conference was full of incredible speakers and activities, but the most meaningful moment for me came at a session I attended called Storytelling about Special Needs Parenting and Disability. The first speaker was not a blogger, but a parent. She’d lost a child and has another with special needs. She referred to herself as “a silent reader”. Wandering her way through the internet searching for people who could relate to what she is going through. I was that person eight years ago. Desperate to find my peers – people who understood me, people who could help my family navigate through this new and rocky territory. My goal for Smiles and Duct Tape (both the blog and the book) is to help people learn that even when life takes crazy turns, that it doesn’t need to derail your family. You CAN HAVE A NORMAL FAMILY WITH A SPECIAL CHILD.
So, it’s time I broaden my reach (sounds fancy, right?). Please help me spread the word.
Thank you Brooke!

Love, Jess

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After two long days we enjoyed a great dinner. Meet two other great ladies and incredible writers — Amy Byrnes http://www.amynameisamy.com and Emily Nichols Grossi http://www.em-i-lis.com.

the talking dream

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I remember the first time I heard my voice on my father’s mini-tape recorder. I was about four, singing Itsy Bitsy Spider. It sounded so strange. He’d taped me just minutes before, but I still questioned if it was really me. Although we live in these modern times full of videos, I’ve managed to avoid them. Not even our wedding made it to VHS or DVD or HD or whatever they’re calling it today. So, imagine how I felt when I sat down and watched myself sharing my story,  The Talking Dream, at Listen to Your Mother.

A few comments:

1.) Bangs don’t translate well with overhead lights.
2.) My hands move in a way that makes me uncomfortable.
3.) I play with my wedding band obsessively.
4.) I’m not a pretty crier.
5.) All this, and I’m still proud.

Check out the rest of the cast — I shared the stage with a talented crew!
Love, Jess