Category Archives: Special days

Life or death at 11 years old

Today is National Siblings Day. This is a moving and illuminating piece from Jamie Trossman, 12 (right), about a time a year ago when her brother Jacob, 14 (centre), went into respiratory distress. Jamie’s twin sister Sierra is on the left.

By Jamie Trossman

I was sitting at the kitchen table, reviewing my homework, when someone called from the family room.

“Jamie?”

“Yes?”

“Can you come here for a second?”

“Coming.”

I left my semi-finished homework on the table and went to the family room. My 14-year-old brother, Jacob, was lying on a mattress, accompanied by a nurse called Dawn.

“I can’t tell what he’s trying to say,” said Dawn. “Can you help me again?”

I nodded and knelt beside Jacob.

“Jake, is there something you want to say, ask or do?” He blinked once, signaling “yes.”

“Okay, then. Is there something you want to say?”

I gave him five seconds to blink, and he didn’t, meaning “no.”

Painstakingly, with these yes and no questions, I deciphered that he wanted to go to the park with me. So we did.

When we returned, I lay down eagerly on my bed to read Harry Potter for the fifth time. Mid-sentence, just as Umbridge was being dragged away by centaurs, I heard Dawn call me.

She was stuck, again, trying to figure out what Jacob was saying. After we realized that he was uncomfortable, and wanted to be turned, I went back to my book.

But before too long I heard “Jamie?” It was Dawn again. I appeared in Jacob’s bedroom.

“Jacob, is there something you want to say, ask or…”

Dawn cut me off.

“Jamie, could you call your mom on my phone, please?”

She handed me a blue cellphone. I dialed my mother’s phone number. Jake let out a muffled shout. Dawn was fumbling with the BiPap machine, a machine that helps my big brother breathe. When my mom picked up, Dawn told me to say that Jacob was in respiratory distress and oxygen and suctioning weren’t making a difference. Now my heart was racing: it sounded serious. My mom told me that she’ll be right home and she’ll get my sister Sierra to hurry up leaving gymnastics. When I hung up the phone, I noticed that Jacob’s face was becoming redder and redder.

“Jamie, do you see that greenish plug?”

I searched frantically for a plug fitting that description. Once I located it, Dawn instructed me to plug it into the wall and I obeyed. Just then, Jacob let out a cry of pain. I felt his fear and helplessness, like a sharp knife was slashing these emotions deeper and deeper into my flesh, making them stronger and stronger.

“On the BiPap machine,” Dawn told me, her voice beginning to shake, “there is a small black dial. Move it over five squares to the right.” I moved the dial and as I did, my fear blossomed. Why was Dawn’s voice trembling? She shouldn’t be so scared, she’s a nurse, I thought. I’m supposed to be able to count on her to know what to do. She must have done this before. When the nurse panics, everyone panics!

“Now, hold the mask to his face, that’s it.”

I bent over him and whispered encouragingly to Jacob, telling him it would be all right. Yet I could hardly convince myself. I was drowning in fear. It was no use, as he could not hear me over the shrill beeps from his machine telling us the obvious: he was not okay.

A horrible thought entered my mind, one I had never voiced out loud, not even to myself: What if Jacob doesn’t survive? He’s probably already dying, I thought.

I looked up to see my mom standing over me. She turned on a bubble machine that emitted a very peaceful, calm sound of rushing water. We continued to listen to the water, when it wasn’t drowned out by the beeps of the machine.

After about half an hour, my dad rushed in. I kept my sweaty hand clasped over the oxygen mask and tried to calm my brother down. My parents and Dawn tried multiple techniques and oxygen machines. Then my mom spoke.

“We can’t do this on our own. We need help.”

I had no clue what she was talking about. Dawn, Dad and I were helping. What else could we do?

“911?” croaked my dad. My mom nodded, and my wet eyes widened. A voice came from the hallway.

“I don’t want to be here when the paramedics come,” said my sister Sierra. Her eyes were swollen and swimming in tears, just like mine.

My parents looked at each other.

“You could go to Ashley’s house,” my dad said slowly, “They’ll take care of you.”

“I want to go with you,” I said to Sierra. I didn’t want to see what happened.

In my mind, I pictured scary looking people in white coats or uniforms taking my brother out on a stretcher, talking to each other in medical jargon that would sound like nonsense words to me, and pressing intimidating and scary-looking tools onto Jacob.

I didn’t want Jacob to go back to the hospital. It felt like he just got back! Jacob spent pretty much all of last year at SickKids. Jake is not a normal boy: he was diagnosed with Pelizaeus-Merzbacher disease (PMD), a disease which prevents him from walking, talking and eating, not to mention his serious breathing issues.

Sierra pulled a sweatshirt over her gym-suit and we put on our shoes. We called Ashley’s parents to ask if we could come over, and explained what was happening. Then Sierra and I ran down the street to her house and knocked on the door. Soon it creaked open and we entered.

“Ash isn’t here,” said her mom. ”She’s at a basketball game.”

We nodded. She led us into the kitchen and we sat at the table. We sat there for several long moments, as Ashley’s mom put her little brother, Jack, to bed. We sat in an icy silence, hoping that everything was fine at home.

After about five minutes I looked over at Sierra. She was staring at her thumbs as if they were a mildly interesting TV show. Sensing my eyes on her, she focused even harder on her sweaty fingers. When she realized she couldn’t avoid me, she looked up at me.

“So,” I said awkwardly, “So.”

“So,” she repeated. Her voice was hoarse from lack of use. “So so so.”

“How did you find out?” I asked.

She glared at me as if I was the stupidest person alive.

“I came out of gym.”

I rolled my eyes. “Okay…And?”

“I came out laughing and talking to Maya.” Sierra burst into speech, every syllable suggesting annoyance.

“Julia had finally flipped for us on tumble track. So Maya and I were recounting what happened, it was funny and all.” She looked disgusted at this thought. How could something be funny when Jake was at home in trouble? “And she was talking to me,” she continued. “We were getting dressed, then Mum came in, and said you called her and we had to go, so we left. I felt bad because I left Maya mid-sentence. She must be mad!”

Ugh, our brother is … well, sick and all she cares about is that her friend is mad at her? Her friend is mad at her because she had to go help him? People’s minds work so weirdly. Someone needs to prioritize.

Ashley’s mom came down the stairs and joined us.

“How are you doing?” she asked sensitively.

“We’ve been better,” I grumbled. Then, interrupting the silence, there was a knock on the door. We all leaped to our feet and raced there. Ashley’s mom answered. It was my mom, standing in the doorway. Her face was unreadable. My heart stopped.

“What happened?” gasped Sierra.

“He’s okay,” she said.

I let out a sigh of relief.

“Does he have to go to the hospital?” My voice was trembling.

“No.” She smiled.

I felt like I could fly. The weight in my stomach was lifted. I gave a shaky laugh and left with my mother.

I was so glad that I was there to help Dawn with the oxygen. I hate to think of what would have happened if I wasn’t home. Dawn would not have had enough arms to do everything at once.

As we walked home, my house seemed a lot closer to Ashley’s than it had when I was running for my life to get there. As my house came into view, I saw a big, white ambulance and a stretcher in the driveway. The stretcher was empty. The paramedics were petting Felix, my dog, and taking selfies with him. They didn’t seem scary after all.

All is fine. For now.

Originally published on Bloom.

Who I Run For – The Adventures of Team Jake

RES

“You’re having strangers stay at your house?” asked my friend tentatively.

“On their honeymoon?”

“Well, we’ve never met,” I said, “but they aren’t strangers.”

My friend was mortified.

I didn’t think it was weird, and I wasn’t worried, despite the fact that our only exchanges with this couple had happened on Facebook.

Kelly and her fiancé Kevin were part of Who I Run For, a Facebook group that pairs children and adults with disabilities with athletes to create a mutual support system. The athletes and their training and events provide excitement for those who can’t be as active, and the buddies with disabilities provide a new kind of purpose and motivation that power the athletes’ workouts.

My 14-year-old son Jacob was matched with Kelly, who lives in New Hampshire, in 2014.

From the day they were matched, Kelly posted messages to Jake about her running adventures. She almost always included photos from her runs and it became clear that Kelly had recruited her fiancé, Kevin, and her son, Nick, to run for my son as well. Together they formed Team Jake.

As time passed, our family got to know Kelly and her family. We saw photos of them holding homemade signs that read We Run 4 Jake along the routes of their runs and we shared Kelly’s stress around the wedding plans, including the last minute aggravation with her wedding gown!

Team Jake came into our lives around the time that Jacob’s health started to deteriorate. We didn’t know Kelly during the 12 years that Jacob’s health was stable and he was able to ski, attend sleep-away camp and be a full-time student. She wasn’t around when we fought, successfully, to have Jake attend a regular school and she missed the time Jake was invited to listen to his favourite singer, Andrea Bocelli, rehearse before a concert.

We were matched shortly before Jake spent almost a year living in the hospital. Kelly was in our lives when Jake was rushed to the hospital and spent weeks in the intensive care unit, hooked up to machines helping him breathe. She was around when he celebrated his Bar Mitzvah as an inpatient. Kelly and her crew stayed abreast of Jacob’s challenges and frequently sent notes of support and upbeat messages to us. She also sent Jake medals from races and t-shirts and other running paraphernalia that she, Kevin and Nick collected.

One cold Sunday morning, when my husband, Andrew, Jake and I were having our weekly coffee at Starbucks, my phone alerted me to a message from Kelly with the most exciting and unexpected news: she and Kevin were coming to meet Jake on their honeymoon.

They planned their post-wedding week so that they would arrive in Toronto on a Friday and we invited them to stay with us for the weekend.

How perfect would it be if the newlyweds and Jake could run a race together? It didn’t take us long to find a race that coincided with Kelly’s and Kevin’s visit. After a brief discussion with the race director, Kelly informed me that everything was set—they would run the race with their buddy and push him across the finish line.

It all sounded great in theory, but would Jake be healthy enough for the 30-minute drive to the race?

The run was scheduled to begin at 9 a.m., but my son hadn’t been out of bed before 11 in over a year. That’s because it takes a long time to clear his airway so that he can sit up in his chair without struggling to breathe. And just two weeks earlier Jake was so ill that he narrowly avoided an ICU admission.

But Jake being Jake, and one to never miss a party (except for his 14th birthday when he was so sick he slept for almost five days) or a chance to be surrounded by friends, we had to try. So we crossed our fingers and made the plans.

I was only a little surprised when I went into his room at 7 a.m. on race day and saw a pair of large green eyes, fully awake, ready for his latest adventure. He was excited and blinked his eyes to confirm that he was ready to run with Team Jake!

Dressed in a teal blue t-shirt that read Kelly And Kevin Run For Me, my son fit perfectly between his runners, who were wearing the same shirts with the banner I Run For Jake. As they crossed the finish line, the trio gladly accepted their medals and posed for photos.

Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

Why I Now Find Halloween Scary

Jake in the box 2015

Designing Jacob’s Halloween costumes is an annual project in our house.

One year, we built a drum set around his wheelchair. Another year my husband, Andrew, constructed a race car emblazoned with a Ferrari logo. And this year, Jacob went as a Jake in the Box. It was a family venture: I came up with the idea, vetted it by Jacob, Andrew built it and Jacob’s twin cousins and twin sisters spent hours painting it in our garage.

Last year instead of trick or treating with his sisters, Jacob spent the evening at a pediatric after-hours walk-in clinic, waiting for confirmation that the blisters on his tonsils were strep throat. We expected that the antibiotics would kick in by the morning and within a few days, Jake would be much better. That’s what had always happened in the past.

But this illness was not going to be cured with a simple dose of Amoxicillan.

By the end of the weekend, he wasn’t better. Jacob was struggling to breathe. His little body working really hard to suck air into his lungs and he sounded like he was gargling. This hadn’t happened before so we didn’t have supplemental oxygen or medication to assist him. Suctioning didn’t seem to help clear his airway and his colour dipped into an unhealthy grey-blue shade.

Not one to panic easily, I knew Jake needed to be evaluated at the hospital. Since Andrew was in Europe on a business trip, and my daughters’ school was on the way to Sick Kids hospital, I decided to drop the girls off at school and continue downtown with Jake.

As we neared my daughters’ school, Jacob’s breathing became increasingly laboured. His colour  worsened and his heart rate was alarmingly high. Jake’s sisters were scared, one of them had her fingers in her ears to block out the sounds he was making. When we pulled up to the school, I scanned the parking lot to see if any doctor-parent was dropping off their child at the same time. I was trying to decide whether to pull over and call 911 or continue driving downtown.

Sierra and Jamie reluctantly got out of the car so I could rush their brother to the hospital. With a promise to call and let them know how Jake is once he was evaluated, I sped off. Still unsure whether I was making the right decision to continue to the hospital instead of waiting for an ambulance, I drove as quickly as I could, while keeping an eye on my son, trying to reassure him that he would be ok.

Fear screamed from his eyes, and I’m sure it was mirrored in my own.

I remember the tightness in my chest, feeling my heart beat against my rib-cage, my breathing fast and shallow as I kept debating whether I was doing the right thing by not calling 911. I reasoned that I would get to the hospital faster than an ambulance would get to us. I know I arrived at the ER and Jake was still struggling. I remember being seen immediately by a doctor, an oxygen mask fitted to my son’s face while the nurse asked me the standard intake questions.

The rest of the day is a blur in my mind. I know that Jake was admitted to the hospital, an iv was inserted and stronger antibiotics were started. I don’t remember the specifics of that day, only that I did send a message to my daughters as promised and arranged for them to get a ride home from school with a friend’s mother.

I will always remember the following morning, my back sore from a virtually sleepless night by Jake’s bedside, my eyeballs dry and sore when I had to press the emergency call button because Jacob wasn’t breathing properly. Within moments, a slew of yellow gowns (doctors, nurses and respiratory therapists wearing the protective garb required before entering a patient’s room who is isolation with an unknown, potentially contagious illness) appeared, a mask was placed over his face and someone squeezed the balloon of air into his throat, calmly telling me she was “going to call a code”.

Jacob ended up in the intensive care unit for 12 days, in the hospital for a total of 33 days. When he was discharged, he was dependent on oxygen at times for his laboured breathing. Six weeks later, Jake was readmitted for another respiratory illness and spent a total of 237 days in the hospital over the past year.

To me, Halloween 2014 marked the beginning of Jacob’s deteriorating health. As the end of October neared this year, I was scared. I couldn’t help but remember Halloween 2014 and the year that followed. As much fun as the holiday is for most people, I dreaded it. I was nervous for Jake and for our family.

Jake had a great costume ready, and our goal was to go out trick-or-treating with some friends. But I wasn’t sure if my son would have the stamina to manage the outing. Jacob is a party-person and not one to miss a chance to be with people, but like so many things in his life, it wasn’t going to be easy.

The original plan was to go to a friend’s house a couple of blocks away for dinner prior to the evening quest for candy. As we were getting ready to leave our house, Jacob wasn’t ready to go. His breathing was not good, and he needed a lot of suctioning. Every time we tried to put him in his wheelchair, his body was working too hard to breathe and he needed to lie down.

Our plan B was set in motion. Andrew and I decided to take Sierra and Jamie as planned, leave Jacob at home to rest with two nurses by his side in the hopes that more suctioning and some time would help him gather some strength.

When the girls were getting ready for the main event of the evening with their friends, Andrew walked home to get Jacob so we could all go out together.

As I exited the house and made my way to the sidewalk, I was greeted by my smiling son, all dressed in his costume and ready for trick-or-treating. Not only did he come out with his sisters, he insisted on staying out as long as they did.

– See more at: http://hermagazine.ca/why-i-now-find-halloween-scary/#sthash.5ryE7cFE.dpuf

Disabled teen celebrates bar mitzvah at Sick Kids

familyWith Jacob, front, at his bar mitzvah are, from left, his sister Sierra Trossman, his father Andrew Trossman, his mother Marcy White, and sister Jamie Trossman. NECHAMA LAITMAN PHOTO

TORONTO — May 18 marked Jacob Trossman’s leap into manhood, and there wasn’t a dry eye in the room.

Surrounded by 120 family members and close friends, all of whom have been touched by Jacob in some way, the young man celebrated what is believed to be the first ever bar mitzvah ceremony at the Hospital for Sick Children.

Jacob has been at Sick Kids since January after spending three weeks in the ICU with a respiratory virus. He suffers from Pelizaeus-Merzbacher disease (PMD), a progressive central nervous system disorder in which co-ordination, motor abilities and intellectual function deteriorate, to the point where people with the condition can no longer move.

Until recently, Jacob used an iPod to communicate, which opened a whole world for him. It was programmed with several main categories and sub-categories that Jacob could activate with just a slight movement of his head.

However, Jacob can no longer move, so a new communication device, called a Blink Switch, was designed just for him.

“When it came time for Jacob to do the brachot before and after the Torah portion, I took his hand with the tallis to touch the Torah. At that point, Jacob would blink his eyes to activate a computer to recite the brachot,” said his mother, Marcy White.

Jacob Trossman is hoisted on his chair during celebratory dancing

He had help with the actual Torah reading from a special friend, Hannah Sandler, who recently celebrated her own bat mitzvah and wanted her bat mitzvah project to relate to Jacob.

“My very close friend Jacob was born with Pelizaeus-Merzbacher disease and is not able to communicate – at least, not with words,” Hannah said. “After my bat mitzvah, I learned Jacob’s portion and recorded it for him so he would be able to read from the Torah through my voice using a computer device.”

Dr. Tom Chau, senior scientist and vice-president of research at Holland Bloorview Kids Rehabilitation Hospital, elaborated on the workings of the Blink Switch: “The device that Jacob is using is based on the measurement of electrical activity of the muscles in the forehead area. When Jacob blinks, he needs to activate his eye muscles. The muscles are controlled by electrical impulses,” he said.

“A headband sits on Jake’s forehead, and that’s the part that captures the electrical impulses of his muscles. When he blinks, it’s detected by the device, and it communicates to a computer via Bluetooth. When the computer receives that signal from the device, it activates the recorded speech. In this case, it was the blessings for his bar mitzvah.”

PMD is a myelin disorder in the same family as multiple sclerosis and is inherited as an X-chromosome-linked recessive trait, meaning affected individuals are male, but the carriers are female. It affects about one in 100,000 babies born worldwide and is not limited to any particular demographic population.

“Jacob can’t talk, walk, or move but he can smile and laugh. His vocal chords are paralyzed in the medial position, so that means they can’t open fully, which makes breathing challenging. As well, they don’t close fully, which makes swallowing dangerous because he can’t protect his airway. But because they are in the middle position he can make sounds,” his mother said.

“Jacob’s simchah was a statement by him and his family of the importance of the inclusion of Jacob and other challenged members within our community,” said Rabbi Baruch Frydman-Kohl, spiritual leader of Beth Tzedec Congregation.

Jacob is alert and aware of his surroundings and has a great sense of humour. As his friend Hannah said, “Right after the ceremony, I said, ‘Jacob you did a great job! Are you happy?’ and he blinked. Throughout the day, I went up to Jacob and I said, ‘This is your day, Jacob. Are you having fun?’ and he would blink. Jacob is an amazing boy, and he understands everything that’s going on.”

Jacob will be going home this month and will have 24-hour nursing care.

Graduation: The Beginning of Round 2

Posted on  by  in Yes We Can

graduationI was looking forward to writing about Jacob’s graduation ceremony. I wanted to recount the wonderful hour that it took for all 54 kids to receive their diplomas. I planned to describe the feeling of pride bursting out of my chest as my son was wheeled down the aisle, sandwiched between the kids whose last name preceded and followed his. I was going to write about how adorable (is handsome a more appropriate word to use now that he’s 12 years old?) he looked in his plaid shirt and navy pants and how he managed to sit through the entire ceremony despite the heat in the room and his painful back.

But the magic of this event was shattered shortly after the service ended.

The moment his name was read as a recipient of the Principal’s Award for Student Leadership, the tears were flowing down my face faster than I could wipe them away. I wanted to shout at all the senior Toronto District School Board (TDSB) naysayers and flash the engraved plaque in front of their faces. I envisioned standing up in the middle of a school board meeting, thanking our few supporters for standing by us and demonstrating to the others how wrong they were.

In the Spring of 2012, senior TDSB administrators said that Jacob did not belong at Elkhorn Public School because “if we do it for you, we will have to do it for everyone”. I wanted to hear these people admit that they grossly misjudged and underestimated my son. And since this is my dream, I pictured the Superintendent, who countered my Elkhorn proposal several years ago by suggesting Jacob spend time in the basement of a different school watching able-bodied kids “participate in phys-ed”, apologizing for the blatant disrespect she showed Jacob by her demeaning offer.

I had those thoughts because the road to this graduation moment was far from smooth. We had to fight against many senseless policies that do not recognize Jacob as a person with thoughts and feelings. Union mandates took precedence over what was best for my son. Without my relentless intervention, Jacob would have been relegated to a school that was filled with caring staff but followed a daily schedule that failed to challenge or stimulate his inquisitive brain.

When I realized that Jacob’s academic and social needs would be best met at Elkhorn (click here for background details), I didn’t realize what a beast I’d have to fight. There was no way I would have predicted that what I thought was a reasonable request would cause such turmoil and upheaval at the head office of the TDSB. If someone had told me that the issue of my son’s education would disrupt the lives of several senior administrators and bring some of the more progressive and empathic thinkers to tears on more than one occasion, I would have suggested they were exaggerating. And if I had been told that my son’s schooling would be the subject of several televisionradio and newspaper stories, I would have chuckled in disbelief.

It was never my intention to be a trailblazer. I was – I am – simply a mother advocating on behalf of her son because he cannot do it on his own. Jacob’s PMD makes everything harder for him but it does not negate the fact that he deserves to be treated as a respected member of society. The treatment I received as his proxy was appalling and discriminatory.

As time passed and the fight escalated, my body had trouble adjusting to its new normal – a constant level of anxiety so high that breathing became a task I had to consciously remember to do. Nights became unbearable. I would wake up with a start, gasping for air, terrified that I’d lost one of my kids somewhere, only to realize that the true source of my angst was Jacob’s school situation.

I had many long and difficult months to ruminate over my request. I repeatedly asked myself if it was worth pursuing or whether I should give up the struggle. But each time I came back to the same steadfast conclusion: this was the best thing for my son.

So, I persisted. Jacob deserved nothing less from the school board and he deserved nothing less from me. And on October 23, 2012 he got what he deserved: he was officially registered as an Elkhorn student.

And on June 24, 2014 he graduated with his classmates.

Shortly after the ceremony, while all the other graduates and their families were celebrating this milestone in the auditorium, Andrew and I were sitting with the principal in her office trying to solve the most recent problem: Jacob does not have a school to attend in September.

Despite proving he can learn, the TDSB is once again ignoring the young man named Jacob Trossman, and only looking at a boy in a wheelchair.

And, once again, I am preparing myself for another battle. I will stop at nothing to ensure that my son has the school experience he deserves.

 

Welcome home Felix!

Once upon a time there was a little boy named Jacob. Jacob had 2 cats that he loved but was terrified of all other animals. One of the only ways to stop Jacob’s incessant crying and screaming was to follow his cats around the house and always stay within sight of them. Hours and hours of this activity never bored this little fellow (the cats on the other hand….)

School trips to the zoo or a petting farm were disasters, as little Jake would spend most of the day screaming until all animals were out of sight and hearing range. He was so scared that if we were out for a walk and a dog was on leash heading towards us, we would have to cross the street to avoid the pooch. Jake’s fear was known to all who cared for and about him, and his scared, white-as-a-sheet face was something we tried to avoid by staying away from any animals other than his beloved Spot and Brother.

Fast forward a few years and nothing changed. Walks were still filled with plenty of dog-avoiding street crossing and in-home cat following.

Last year a friend started posting about the work her family was doing to get a service dog for their PMD son and I started thinking about how great a dog would be for Jake. I reasoned that if he had a dog of his own, it could be trained to stay with him and we wouldn’t need to follow Spot and Brother around the house. If Jacob had a dog, they could hang out together and maybe, just maybe, some of Jake’s screaming would subside.

Just one problem stood in the way….Jacob’s fear. I had to figure out how to show him that dogs are fun and playful, not scary.

Pictures of dogs were ok for Jacob, and so were stuffed animals that resembled dogs. Friends with canines helped us, by letting Jacob spend a bit of time with their pooches but only until Jake let us know he had enough. Gradually, he started warming to these familiar furry creatures until I noticed one day that Lola, Taryn’s Goldendoodle, was sitting on Jake’s feet and that helped calm his crying. That was when I knew Jake had become a dog-person!

Thanks to Chris and the incredible team of puppy raisers and trainers at National Service Dogs, Jake now has his own furry foot-warmer named Felix.

 

Jacob Turns 10!

We had a three parties for Jacob – one was a family party, then he had his annual “princess” party with all his favorite Yedidus counselors and a party for his school friends. Instead of a traditional cake that Jake does not eat, I finally came up with a “Jake Cake” – the two foods that he enjoys – pickles and cheesies!

 

Jacob had a great ski season!

 

This winter Jacob participated in a ski program through the Canadian Association for Disabled Skiers (CADS) for the first time. The program was fantastic, and Jacob had an incredible time. Yesterday was his last day for the season and I had the opportunity to ski with him – I even steered him down the hill a few times. I’m not sure if his favorite part was the chairlift ride or zooming down the hill, but something makes him laugh in the midst of both. It’s a wonderful sound to hear!

The following is a letter I sent to the executive director of CADS summarizing our experience:

          This season was our first attempt at skiing for my 9 1/2 year old son. Jacob has a rare neurodegenerative disorder called Pelizaeus-Merzbacher Disease (PMD) and as a result, he has limited head control and is unable to sit unassisted. He doesn’t eat by his mouth and gets all his nutrition through a tube that was surgically implanted into his stomach when he was an infant. His vocal cords are paralyzed and he does not speak. Although we are unable to get an exact assessment, we know his vision is poor. But he understands almost everything around him and has a crazy sense of humor. Like most boys his age, he loves gross jokes and speed. I have tried to find a way for him to ski in the past but have always been told that he couldn’t participate. Then I heard about CADS through a classmate of Jacob’s and contacted Wayne. Our biggest hurdle to participation had nothing to do with Jacob’s ability or disability, it was about finding volunteers who had the skill (and strength) to handle a sit-ski. In mid-December Wayne contacted me with the good news that Jacob was accepted into the program.

          When we arrived on our first day, it was -25 with the windchill but the spirits in the trailer were high. Angus came and helped get Jacob settled safely into the sit-ski and showed no apprehension around him at all (this might seem basic but sadly, it’s a rarity). He put Jacob at ease (and Jacob has been known to scream uncontrollably in new situations). And then Jule  joined us and started chatting with Jacob in a way that made me smile. She showed no hesitation and behaved as if she had known him forever.
          The session was off to a good start and I went inside the main chalet to warm up. When I returned to the CADS trailer, Jacob was already inside, lying on a sofa with Jule sitting on the floor next to him. Jule was reviewing the items of clothing and accessories that Jacob wore on the hill (helmet, goggles, neck warmer etc…) and showing them to him. The first thought that popped into my mind was “she must be a teacher for kids with special needs” and when I asked her, she said no, she simply likes kids.
 
          I was excited for Jacob to participate in CADS and was confident he would have fun. Our experience has tremendously surpassed my expectations. Without a doubt, it is because of people like Wayne, Angus and Jule who make it seem like Jacob’s presence on the ski hill is the most natural thing in the world.

Jacob’s first few weeks of camp

Jacob is having a great time at camp. For the month of July, he is at a day camp near our house and is bussed there and back each day. He spends his time engaged in an assortment of activities including music, sensory stimulation, swimming, cooking and painting. Jacob is smiling his huge grin in each photo I’ve seen and tells me he is having a good time every time I ask.

When he comes home from camp, he has been spending time in his stander and/or walker. Watching him zoom around the house in his walker is amazing, and we have to be pretty quick to keep him from purposely bumping into the walls or anything else that is in his way! Seeing him upright in the stander is also an incredible sight – it’s wonderful to see how tall he is getting, something that isn’t always so obvious when he is in his chair.

Watching him swim is still the most awesome (one of J’s favorite words!) sight – with a special neck ring, he is able to swim independently and can do laps in a 23m long pool. He propels himself with his kicks and uses his arms in a dog-paddle. It’s simply astonishing to witness. When I figure out how to upload a video from my phone to this blog, I will post it.