Tag Archives: ALD

quietly clapping

Posted on by

22

As I looked through Jack’s backpack on Friday afternoon, I found a small whiteboard and a note from Monica (Jack’s school aide/school mom). She said that she had bought the board for Jack thinking it might be interesting, “He’s doing great answering questions. He’s so smart!”

I almost ignored the note. We get a lot of “great ideas” here at 26 Clinton Avenue, and most end up being less than successful experiments. The whiteboard lay on the kitchen island until later that night when Dan and I finally tried a few simple “yes” and “no” questions. Jack quickly and clearly circled the appropriate answers. We were impressed, but got distracted and didn’t think too much about it. Saturday we tried again with Anna, and she didn’t give her brother an easy time. She started asking questions, requiring Jack to read the options himself before circling the correct answer. Question after question he answered them all without hesitation. Eager to test how much he was reading, Anna took it a step further. She started writing out the questions silently. No hints or help. Jack didn’t miss a beat. He’d look at the question and circle the correct answer.

Over the last eight years we’ve seen hints that Jack could still read, but we had no idea to what extent. Until now, his fine motor skills have prevented much progress with holding a pen. Even something as simple as a circle was out of his reach. Now, Jack might not need to relay solely on his smile to get his point across. He may finally have access to words. AMAZING! Jack being able to tell us what he wants for dinner OR how he’s feeling OR what hurts. The possibilities are endless.

We’ve shared this update with some friends and family and the news has been greeted with high-fives, tears and hugs. Everyone knows that communication has always been on the top of our “wish list”. I think people have been surprised by our calm demeanor while describing this new milestone. I know we should be opening the champagne and dancing in the streets and we will – in time. We’re simply being careful. It’s self-protection.

Progress doesn’t always happen in a straight line and for people with ALD the road can be particularly inconsistent. ALD can tease you with progress than steal it back without explanation. This makes celebrating successes a little nerve wracking. Our family braces for good news as much as we do for bad news. I think every day that Jack is able to repeat his new trick/mind blowing triumph, we will feel a little more confident about celebrating. Until then, we are quietly clapping, dancing and doing summersaults.

Love, Jess

Our family has tried EVERYTHING to help Jack access language. It’s amazing that something as simple as a little whiteboard might be the start of a new chapter. Monica – we love you!!

FullSizeRender-41

Jack didn’t miss a beat answering this one!

FullSizeRender-42

Anna left this for Jack earlier today. He didn’t hesitate.

Being “liked”

Posted on by

6

IMG_3906

Yesterday I went on Facebook and asked people to “like” Smiles and Duct Tape. I need to explain. I wasn’t asking people to “like” me (not really). I was trying to get more information about who reads this blog. WordPress give me facts about country/age/gender, but I’ve been curious about specifics. I’ve wondered how many were friends, family, Maplewood folks, ALD families, or random people who like counting their blessing that their lives are easier than ours.

As soon as I hit send on my status update, I thought, my family is really going to get a kick out of this one. I have a reputation for needing a lot of positive reinforcement, and this seemed to prove the point. I’m not sure where my insecurities stem from, but since I was a little girl I’ve always needed more than my share of pats on the back. Although I am holding to my “need for information” excuse, there might be a little part of me that wanted to know if my words are worthy.

The most significant reason I write is because it helps me to process this life. Finding the right words is like working on a puzzle. I sit down with something on my mind and write without much thinking – like throwing all the misshapen pieces on a table. Then I start to organize the mess. As I work, I see the picture start to form as the story comes together. I know when the piece is finished, because the picture is clear and I feel lighter. If I can explain what we are going through, it means I’ve solved that puzzle.

But it’s not just for me, I also write hoping that this blog helps other people. Whether they’re families like ours who are looking for their peers or “typical” families trying to better understand what it’s like to live in our shoes. I think people respond to the blog because it’s real stories about a real family. And, there’s nothing complicated about the way I write. I fell into writing without much training and hopefully that makes my style approachable (although my lack of schooling may explain part of my insecurity). A friend once said that she could hear my voice when she reads my blog. That was the best compliment I’ve ever received.

So I write for survival and to help others, but I’d be lying if I said that I didn’t care about numbers and compliments. I do look at the stats every day and smile when I see a new reader or another country pop up on my stats page. I do like when someone reaches out to tell me that they enjoyed my latest piece – like I’ve been able to create some good out of this nightmare we’ve been through. It doesn’t make it worth it, but it helps and I guess I am still that little girl who needs validation.

Smiles and Duct Tape received 130 “likes” yesterday. Thank you! Now, if you can hit “follow” on the bottom right corner of this page, I can really feel like this whole blogging thing matters AND I promise to stop begging for love for a while.

Love, Jess

smack in the middle

Posted on by

6

Unknown

I live smack in the middle of two worlds. I know I’m not alone in this. Many special needs parents also have one foot in “typical”. We need to maneuver back and forth all day long. We usually manage to make it look seamless, but trust me – it can be exhausting. And, for our family it’s even more complicated.

Jack didn’t get sick until he was eight years old. Until then, he was reaching all his milestones and moving along like most of his peers. We experienced only “typical” for years before being introduced to “special”. Not sure if that fact makes our situation more difficult, but it certainly sets us apart from many in the special needs population. Sometimes I’m not sure we belong in either group.

Most of our community is part of the “typical” world. Jack was our first child and he was born healthy and strong. As he started school, we developed friendships with his classmates families – many are still our closest friends. We were knee deep in “typical” when ALD busted into our lives. We’re lucky that our friends have stuck by us through our journey. They’ve helped us every step of the way, but few of them can really appreciate what our lives look like day to day. Even those who spend a lot of time with us are rarely in the bathroom trenches, changing Jack’s g-tube or scheduling the countless doctors appointments.

We have made a few connections with other special needs families, but I sometimes feel like an impostor with that crew. They have lived this life longer and seem to have mastered the rules, the language, the ins and outs of all things “special”. They’re a welcoming group, but I’m still insecure with my role as special needs mom. I just float along, trying to do what’s best for my family, while keeping my eyes and ears open so that I don’t miss too many of the requirements of taking care of my special child.

Even though I often feel a little out of place in both worlds, most days I think I do a fairly good job. I can go to a varsity lacrosse game to watch one of my children race down the field and leave at half-time to give my other child hydration through the tube in his stomach. I can open a class schedule full of advanced courses from one school and then sit down to fill out a “seizure action plan” for another school. I can get home from a neighborhood party and, after drinking too much Sauvignon Blanc, text my daughter to remind her of her curfew and then change my son’s soiled diaper. This back and forth has become second nature. Only occasionally does living in the middle of two worlds become tiring. Maybe it’s lack of sleep or maybe I’m still mourning the end of vacation, but today has been one of those days.

This morning I woke to the sound of my alarm for the first time since June. I was so confused by the chime that I managed to incorporate it into my dream. Finally our rotten dog, Finn, got sick of the noise and woke me with a lick (sometimes that dog is so sweet). 6:30 and I are not great friends, but I was excited enough about Anna’s first day of school that I slid out of the cozy sheets and called up to Anna’s third floor teenage palace.

“First day Banana! I’ll meet you downstairs. Eggs! You need eggs for your first day.”

“Nope. All I want is a bowl of cereal. Too early for a big breakfast. And, I’m ready. I can do it myself.”

Then, she started walking down the narrow stairs. She had a bright “first day of school” smile and the shortest shorts you’ve ever seen.

For the next few minutes I had an internal conversation with myself. Measuring the benefits of allowing her to go to school with a smile, barley dressed or having a fight. She had such a great summer. She ran a lacrosse camp, conquered Outward Bound, and did more summer work that I think was fair or necessary. We’ve gotten along so well. I started to lean towards letting her leave the house without comment, but then I watched as she reached for a cereal bowl. Her tiny shirt started to rise up and I couldn’t help myself.

“Anna, you need to change.”

That’s when the screaming began. My camera was charged on the kitchen island, ready for that first morning picture. Instead of a sweet photograph, I said goodbye to my daughter and got nothing but a roll of the eyes and a slam of the door. She was wearing black, short cut-offs and a tight white shirt – that was after changing. Parenting Part One “typical” was complete.

I took a deep breath, turned around and walked up the stairs to check on Jack. I poked my head into his room, hoping he was asleep so that I could enjoy an hour or two for myself. I was greeted with a sweet smile and a sour smell. Time for Parenting Part Two “special”. I carefully helped Jack to his feet and walked him to the bathroom. I stripped him down in the shower, trying to avoid Finn disappearing with any of soiled clothing. Once Jack was showered, brushed, and dressed, I started the laundry and brought him downstairs for breakfast and medication.  At least Jack went through the motions with me, never losing his smile – and his silence was almost welcomed after the screams from his sister. Still, it’s been one of those days that my two worlds are not cooperating. I got shat on twice today before I’d even had my first cup of coffee.

Love, Jess

I did receive a text this morning from my princess, “I’m in study hall and bored. Text with me.” I’m pretty sure that’s an apology.

kids

Rehabilitate the Gait can wait

Posted on by

0

IMG_3836

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

Posted on by

1

IMG_3811

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

Posted on by

1

IMG_3752

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

Posted on by

1

FullSizeRender-1

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

jack knows how to party;-)

Posted on by

0

DSC00407It’s been a long week. Saying good-bye to Bananz and then trying to get ready for a month away on Block Island — okay, I realize that this doesn’t sound like a particularly awful week. It’s just been a little cluttered and frantic. I’ve been feeling overwhelmed.

When I remembered that I needed to plan a birthday celebration for Jack before we headed out of town, I was less than eager to add to my stack of to dos. Luckily, Horizon High School (HHS) is a place that appreciates a good party as much as our son does. “Planning” a party at HHS simply requires a few texts with Monica (Jack’s aide/ AKA his school mom) and a phone call with his teacher, Mr. David. Add some pizza and a cake from Maria AND YOU HAVE A PARTY!

DSC00437

With One Direction playing, Jack danced his way around the classroom passing out hugs as party favors. You’ve never seen a teenage boy as happy at Jack. Every time I walk into his school I feel so lucky that our family is part of their community.

DSC00421

Jack’s school mom, Monica. We love her.

DSC00428

Maria and her beautiful daughter. Maria doesn’t just make delicious cakes, she’s the reason I’m sane.

For an hour, I got to forget about all the things I need to get done before the ferry takes us to our August home. Now it’s time to go back to the shopping, packing, re-packing, bill paying, cleaning up, etc.

Love, Jess

and she’s off!

Posted on by

0

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.

IMG_6184

a banana goes into the wild

Posted on by

4

DSC00195

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

IMG_3227DSC09983 DSC00037