Why Facebook Is My Lifeline

I love Facebook.

It’s fun to see photos of smiling faces and breathtaking views from mountain tops at sunrise. I occasionally enjoy seeing a photo of a glistening filet of salmon nestled on a bed of artistically arranged kale and quinoa posted by a proud home-chef. And sometimes I chuckle at a cartoon posted by a “friend”.

But Facebook, to me, is more than a social connection with people I thought I’d never hear from again. It’s more than a chance to peek into the lives of former classmates or colleagues. And it’s a great deal more than laughing hysterically at auto-correct text bloopers.

As a mom of a child with a severe disability, it is my salvation. It is my connection to a world of people who have an understanding of a current challenge I am facing, parents who have experienced something I am struggling with and families who have tried various solutions to obscure problems only those with medically fragile children can relate. It is also a forum to vent to people who “get it” because they have been where I am.

Thanks to Facebook, I have met other parents of children with Pelizaeus-Merzbacher disease (PMD) who hate the disease as ferociously as I do but adore their sons with an equal amount of love. Because of Facebook, Jacob has “PMD brothers” all over the world.

Jacob was born in 2002, a couple of years before Facebook was invented. At the time, Google was in its infancy and my medical research was only minimally performed online. Medical journals were not widely available in electronic format and information exchange was mostly over the telephone and only occasionally through email.

I did not know anyone who had a child with challenges. I did not know anyone who was fed by a tube surgically implanted into his stomach because he couldn’t swallow. I did not have a chance to converse with other mothers who shared my sense of failure for not being able to nourish their children in the usual way.

In 2002, a suction machine was a scary piece of equipment and I was terrified to use it. My hands trembled as I tried to snake the plastic tube into my son’s nose and down his throat to vacuum out the mucous that impaired his breathing. I would have loved to share my fears with other parents who understood what I was feeling. Maybe they would have been able to help me overcome my anxiety around that dreaded but lifesaving appliance.

I didn’t know anyone who had a child with such intense needs that he couldn’t be left alone, even for a few minutes while he was asleep. I had no idea whether I would ever adjust to the new life I was catapulted into, and I had no clue how to figure it out.

Those early days were scary, depressing and isolating. Over time, I developed the patience and skills to comfort my son when he was in agonizing pain and screaming relentlessly for hours. Eventually I conquered my fear of the feeding tube and was even able to replace a broken tube in less than a few minutes. But it took years before I was comfortable with the suction machine, something I use for hours every day at this point in Jacob’s life.

I can’t help but wonder whether it would have been a bit easier if I knew others in similar situations when Jacob was younger. I think about how things could have been different if I had a network of experienced parents with whom I was able to share my fears and celebrate my son’s inchstones (moms like me don’t celebrate milestones). I knew there were others in similar situations but I had no way of meeting them.

As the years went by, technology started developing in ways that opened up the world to me. It started with a Yahoo chat group for families who had kiddos with PMD. It was the first online resource I encountered where people gathered for support, feedback and suggestions related to the challenges involved in raising a child with PMD.

I recently realized that Facebook is my invaluable resource. When Jacob was having feeding issues, I posted my questions in a Facebook group for Tubies. When I had a question about Jake’s scoliosis, I posted it in another group. Of course doctors have this information and always answered my queries to the best of their abilities, but getting a perspective from people who are living the answers has its benefits. Hands-on, real life experiences are key for moms like me. I access this information and add it to what I already know. It helps me make the informed decisions that I have to in order to care and advocate for Jacob.

The past 300 days have been the hardest of my life. Jacob was in the hospital for 237 of those days. He spent over seven weeks, spread out over four visits, in the ICU with machines helping him breathe. And through all those excruciatingly long and harrowing days, I was never alone. Even when I was the only person sitting by his bedside, I had a gigantic network of people who understood what I was experiencing and people who were only a message away. I constantly received messages of support, read snippets of their experiences and was comforted when I saw a new “like” to an update. (As an aside, I wish there was a “dislike” button for heartbreaking posts.)

Facebook is my lifeline to the world of medically fragile and special needs children.

– See more at: http://hermagazine.ca/why-facebook-is-my-lifeline/#sthash.zy90x5vv.dpuf

With the blink of an eye, disabled Toronto boy becomes a bar mitzvah

The Times of Israel picked up the story and interviewed Marcy:


Friends and family lift Jacob Trossman as they dance at his bar mitzvah celebration in Toronto on May 18, 2015. (Nechama Laitman Photography)

Jacob Trossman celebrated his bar mitzvah in Toronto last month together with his family and friends. In many ways, his was a typical Jewish coming of age ceremony. The bar mitzvah boy donned a tallit (prayer shawl) for the first time, prayers were uttered, and the Torah was read. However, there was one major way in which Jacob’s transition to Jewish adulthood was unique. Unable to move or speak, Jacob recited the blessings for his first aliyah to the Torah by blinking.

Afflicted since birth with Pelizaeus-Merzbacher disease (PMD), a degenerative central nervous system disorder, Jacob used a technology called a Blink Switch to activate a computer to play a recording of the blessings read before and after reading the Torah.
“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,” Dr. Tom Chau, senior scientist and vice president of research at Holland Bloorview Kids Rehabilitation Hospital, explained in an interview with the Canadian Jewish News about the technology developed at the hospital’s PRISM (Paediatric Rehabilitation Intelligent Systems Multidisciplinary) lab.

There was never any question in Jacob’s parents’ minds that their son would have a bar mitzvah ceremony, despite the severe deterioration to his coordination and motor abilities caused by PMD, a disease that is related to multiple sclerosis and belongs to a group of gene-linked disorders known as the leukodystrophies. These diseases affect growth of the myelin sheath wrapped around and protecting the nerve fibers in the brain. PMD is inherited as an X-linked recessive trait, meaning that the affected individuals are males and their mothers are carriers of the genetic mutation. It is no more prevalent among the Jewish population than among other ethnic or racial groups.


Jacob Trossman with his sisters Sierra (left) and Jamie, and parents Andrew Trossman and Marcy White at his bar mitzvah ceremony in Toronto on May 18, 2015. (Nechama Laitman Photography)

“The only question was what form it would take,” Jacob’s mother Marcy White told The Times of Israel about his bar mitzvah.

Last summer, family friend Hannah Sandler, who was becoming a bat mitzvah herself, offered to learn to chant Jacob’s Torah portion, in addition to her own. The idea would be for her to record herself chanting Jacob’s portion and upload the file to a computer so that Jacob could activate it during his ceremony using a customized communication technology he controlled with slight movements of his head. Jacob and his family were touched by Hannah’s offer, and they set Jacob’s bar mitzvah for this past Monday, May 18.

But then Jacob became very ill late last fall and was hospitalized at The Hospital for Sick Children (referred to by locals as Sick Kids) for a month. He got sick again in January and had to return to the hospital, where he spent three weeks in the Intensive Care Unit.

“Jacob was having serious breathing issues, so the bar mitzvah was not top of our mind at that point,” White said.

Rabbi Adam Cutler of Beth Tzedec Congregation had been meeting with Jacob, who has liked learning Hebrew and Bible stories, in preparation for his bar mitzvah ceremony.

“Like all b’nai mitzvah celebrations, we were hopeful that the service would take place at our synagogue. But as the day approached and the likelihood of Jacob being well enough to celebrate at Beth Tzedec remained low, a decision was made to do the service at Sick Kids, where Jacob was a patient,” Cutler told The Times of Israel.

White and her husband Andrew Trossman were not initially pleased about having the ceremony at the hospital and thought about postponing it. However, the family agreed to hold it in a bright, glass-walled event room in Sick Kids’ new research tower after Jacob’s doctors told them not to push the milestone off.

“They told us, ‘You don’t know what the future holds. This will be the time around Jacob’s 13th birthday, so do it now,’” White said.

As the date approached, technicians from Holland Bloorview came to Sick Kids to train Jacob, who had previously been able to activate a communication system pre-programmed into an iPod with slight movements of his cheek, to use the new Blink Switch. It was also decided that Hannah, rather than recording Jacob’s Torah portion, would chant it in person at the ceremony. Jacob’s 10-year-old twin sisters Sierra and Jamie prepared to deliver a d’var Torah, a speech about their brother’s Torah portion.


Jacob Trossman’s friend Hannah Sandler (right) prepares to chant from the Torah as he recites the blessings using a Blink Switch as his parents (center) look on. Toronto, May 18, 2015. (Nechama Laitman Photography)

“Our philosophy at Beth Tzedec is to accept every child as they are and to challenge them Jewishly. For many typical kids, they participate in our bar/bat Mitzvah program, learn to read Torah and Haftarah and write a d’var Torah. For others, that approach is not appropriate. We want to make sure that each child is challenged, learns, and feels good about the process leading up to their becoming a Jewish adult. While Jacob’s service was on the one hand unique, it was at the same time exactly what we do for every child who is approaching bar or bat mitzvah,” said Cutler.

White said she was “very concerned” about the bar mitzvah as May 18 grew nearer. What kept her up at night were not the usual worries about catering, seating plans or decorations.

“Would he be able to sit through the whole ceremony and the party? Would he need to be suctioned? Would he turn blue?” she worried.

‘Jacob has taught them to slow down. He’s taught them to be present in the moment with him’
Jacob, who had attended a regular public school with the help of two special needs assistants and a nurse until his recent bout of illness, was having breathing troubles two days before the ceremony and spent all day in bed the next day. It turns out Jacob had been conserving his energy, and on the day of his bar mitzvah, he was “perfect,” according to his mother.

“Because of Jacob’s health, we were concerned that he may lack the stamina to sit through a full service. It was, as it turned out, an incorrect assumption. Jacob was full of energy for the service and the party to follow,” said Cutler.

White, who has written a book about Jacob and started a foundation to further PMD research and patient advocacy, asked each of the 120 guests (all whom Jacob personally knew) to contribute to a special book she was putting together for her son. She asked them to write what they had learned from Jacob over the years.

People noted many things about Jacob, including his wonderful sense of humor and his constant smile despite the pain and challenges he has faced.

“One of the main things people expressed was that Jacob has taught them to slow down. He’s taught them to be present in the moment with him,” White said.

by Renee Ghert-Zand Renee Ghert-Zand is a reporter and feature writer for The Times of Israel.

Disabled teen celebrates bar mitzvah at Sick Kids

With 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.

Listening to Those Who Cannot Speak

jamie, jake and felix

My son Jacob cannot speak. I am his voice. I am his biggest advocate and will fight as hard as I can to get him what he needs.

My ongoing challenge is convincing people that Jacob understands what goes on around him and reminding people that there is a person inside his physically challenged twelve year old body. And recently, one of Jacob’s sisters decided she was going to make sure people know that kids like Jake deserve better treatment.

At ten months old, Jacob was diagnosed with Pelizaeus-Merzbacher Disease (PMD), a degenerative neurological disease that impairs his ability to sit, speak and eat. The first few years of Jacob’s life were filled with tests and heartbreaking results. We were told that he would never walk, swallow or live to be a teenager. I would enter each doctor’s office with a knot in my stomach, prepared for the inevitable crushing news about something my son would not be able to do.

As the years went on, I grew accustomed to listening to the various prognoses with one ear.

Although I do not have a recognized medical degree, I have earned a PhD in Jacob. I understood that his disease is rare and most medical professionals have not encountered a PMD patient in all their years of practice. I knew their gloomy reports were not accurate, but what did I have to do for them to listen to me?

When Jacob was one year old, he had electrodes placed all over his tiny head, wires transmitting his brain waves to a computer. I held my terrified baby on my lap, carefully supporting his wobbly head, while he screamed as images and lights were flashed on the screen inches from our faces. The test was conducted to measure how efficiently he processed visual information.

Several weeks later I sat fidgeting on a hard chair in the sparsely furnished office that doubled as an examination room while I waited for the doctor to explain Jacob’s visual acuity. As the pediatrician opened Jake’s beige file, filled with three inches of medical reports, her eyes filled with tears and her voice lost the confident, professional tone. She gently explained that “the tests reveal that Jacob cannot see.” I was stunned and did not know how to respond. I knew he saw me because he smiled when I positioned myself in front of his often-expressionless face. I was told that my curly haired son was blind. The test was wrong, but who would listen to me?

As Jacob grew, he struggled.

His various test results were inconsistent with what I believed he knew. If he really was blind, why would he scream in fear every time a giraffe appeared on television during the Baby Einstein video? If he didn’t understand anything, why would he start to squirm in fearful anticipation shortly before the scary giraffe portion of the movie?

When my little guy was sixteen months old and a mere twelve pounds, I enrolled him in a program at a school for children with special needs. The twice weekly Infant Intervention program consisted of physio, occupational, speech and music therapy. These mornings were filled with activities tailored to challenging Jacob’s abilities, helping him develop new skills and assessing his needs. Everyone in the room knew to avoid bringing a yellow toy close to Jake because that colour elicited ear-piercing screams from him that would only subside when the item was removed from his line of sight. And according to the doctors, Jacob was blind.

As the years passed, it was easy for a professional to administer a test and tell me that Jacob does not comprehend, that his ongoing screaming during the exam was evidence of an uncooperative, uncommunicative child. But those who spent time with Jacob knew that his infectious high pitched giggle when he heard the punch line of a joke was a constant reminder that my son understands what is happening around him.

He does not like to be treated as if he does not know what is going on.

When a teacher administered a standard assessment suitable for toddlers to six year old Jacob, he became annoyed that she was ignoring his true abilities. He purposely gave false answers, as if to say, “Of course I know that the object in your hand is a pencil but since you insist on asking me such a ridiculous question, I will tell you that it is a truck.” That is why he started laughing after each incorrect response.

As Jacob grew, so did his comprehension. He laughed at the punch-line of funny (and some not-so-funny) jokes, his yes and no responses became more consistent and he learned how to use a specially adapted communication device to actively participate in his world.

One of my daughter’s pet peeves is hearing people talking to her big brother as if he were a small child.

Jamie’s fists clench and her cheeks redden with the sheer effort of holding her tongue as she listens to well-intentioned people talk in the loud, slow and simple language often reserved for toddlers and aging grandparents.

Our family is far from typical. Sierra and Jamie have said that it’s not easy having a sibling with special needs. Our family does not travel together, we rarely go to a restaurant as a table of five and we’ve only been to one movie with Jacob. But they will acknowledge that they love their brother and enjoy playing with him, reading to him and including him in their play dates with their friends.

Last week, as Jamie, Felix (Jacob’s Skilled Companion dog) and I were leaving the hospital after visiting Jacob, we noticed a girl in a wheelchair. This little girl, who was around Jamie’s age, was steering her wheelchair in circles and was waving her right arm in the air excitedly. Realizing her exuberance was because she spotted Felix, we walked over to the girl and her mother. After asking her if she wanted to play with Felix, Jamie helped her touch Felix’s head and assisted her in giving our dog a little snack.

As we walked away, Jamie said she hated the way people were staring at the girl as she was flailing her arms. She wondered why they don’t realize that she is just like any other kid. The more we talked about it, the stronger her conviction became about wanting to let kids know that just because someone looks different, it doesn’t mean they are any less of a person. They have the same thoughts and feelings as someone who is able-bodied. She vowed to do something significant to raise awareness about the similarities between kids with disabilities and “typically-developing” kids.

Look out world, Jamie is a very determined ten year old on a mission!

This post was originally published on hermagazine.ca

Jacob’s Disease and the Impact on our Family


I hate PMD.

On March 21, 2003, I was told that Pelizaeus-Merzbacher disease (PMD) was the cause of Jacob’s assorted medical issues. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two months ago because the disease had weakened his immune system to such a great extent that a cold required him to have mechanical assistance to stay alive, my hate relationship with PMD was in full swing.

These days, I can’t think of PMD without my heart twisting with loathing. This is hate to the extreme.

When Jake was hospitalized for the first three months of his life, I repeatedly said it wasn’t fair. Why was he, an innocent newborn with a whole life of possibilities ahead of him, suffering such excruciating pain and struggling so hard to breathe? It didn’t take long for me to realize that the saying life isn’t fair, often used half-heartedly by my parents when I complained as a teen about not being allowed to go a party with my friends, is 100% accurate. Life isn’t fair and my son’s disease is proof of it.

Life’s cruelty and my abhorrence of PMD came crashing into our house when I had to explain to my twin daughters that Jake’s PMD was worsening.

The fact that Jacob has PMD is wrong. The rapid change in his health is completely undeserved. And the fact that Jamie and Sierra have to experience all this alongside their brother is unreasonable in its heartlessness. At ten years old, Jamie and Sierra are forced to witness this unfairness every day.

When Sierra and Jamie were six years old, they gave their friends an impromptu genetics lesson by explaining the inheritance pattern of the disease that affects their big brother. They’ve always known that Jacob’s care is difficult and there are nurses in his room every night to ensure his medical safety. But until recently, they didn’t realize that PMD is a fatal disease and that despite our efforts at researching a cure, their brother might not live long enough to benefit from medical breakthroughs.

I’ve learned that people adapt to changing conditions. I remember saying that I wouldn’t be able to stick a tube down my son’s throat and suction out the mucous that was blocking his airway and causing him to turn blue. Now, I do this every day and my hands remain surprisingly steady during the process. When Jamie used to hear the rumble of the suction machine, she would stop what she was doing and put her hands over her ears to block out the awful sound. But, last week, as I was threading the tube down Jake’s airway, Jamie held her brother’s hand and talked him through the entire procedure, even wiping away the tears that pooled at the edges of his eyes. There was so much unfairness in that scene, but also a ton of love.

My daughters experience things on a daily basis that youngsters should not have to bear, and that is deplorably unfair. They are aware of the frailty of their brother’s lungs, they know how to read his oxygen monitors and understand what numbers indicate a dangerously high heart rate. They dissolve into tears when he needs to go to the emergency room because, in their experience, that is the start of a long hospitalization and a complete disruption of their lives.

Caring for Jacob is extremely challenging and scary at times. He can go from breathing quietly to sounding like he is drowning in his saliva in seconds. The level of oxygen in his blood can plummet from a safe 98% to a dangerously low 77% in the blink of an eye. The doctors and nurse practitioners have taught me how to care for him and when to intervene. So for the most part, I know how to “manage” my son’s precarious medical needs. I don’t like it, but I am adjusting to the new level of care that Jacob requires.

Late at night, when the house is quiet, save for the humming of the oxygen concentrator in Jake’s room, what keeps me awake are thoughts of how PMD is affecting my twin daughters.

Prior to their births, I read a lot about siblings of kids with special needs. Everything I came across consistently stated that kids raised in homes with atypical children grew into empathic, sensitive and caring adults. I do believe that, and have already witnessed several examples of my daughters’ concern for the feelings of their friends. They display a level of compassion beyond their years.

Sierra and Jamie are forced to cope with things many adults are unable to fathom. My heart shatters when they come home from school crying because their friends don’t understand what it’s like to live with a disabled brother whose health is so fragile. I have to explain that most of their friends aren’t emotionally equipped to support them as they express their fears. And that, too, isn’t fair.

How do I hold it together when they ask questions like“why doesn’t home feel like home anymore?” or “why does my life have to be harder than everyone else’s at school?” or “will a cure for PMD be discovered in time for Jake?”

These are questions about which little kids shouldn’t have to wonder, and issues from which I desperately wish I could shield my daughters. But I can’t. So we talk. In the car, on our way to an activity, we talk about why we don’t travel like their friends families. And at dinner, we talk about whether the auditorium where the girls are performing in a play is wheelchair accessible so Jacob can come and watch. And late at night, in the darkness of their rooms, we chat about how unfair it is that their brother has PMD, that he can’t tell us exactly what he’s thinking or feeling and that they are scared to be alone with him in case he stops breathing.

We love Jacob with every fibre of our beings. But we hate PMD.

This post was originally published on hermagazine.ca

Jacob in the Hospital – It Takes a Village

By Marcy White November 25, 2014

it takes a village

The most terrifying words I’ve ever heard were spoken 21 days ago, shortly after I pressed the red Nurse Call button beside my son’s bed in his hospital room. It was around 9 a.m. on the second morning of Jacob’s recent hospital admission for breathing-related issues.

I was sitting on his bed when he started struggling to breathe. His vitals reflected on the monitors looked strong, but something wasn’t right. I pressed the Nurse Call button because I wanted to be reassured that Jacob was okay.

The nurse assigned to my son was just coming on for her shift and had not met him prior to this moment. She took one look at Jacob and knew he was not breathing well. She administered some medicine via a pressurized mask and called for assistance. When I noticed her hands shaking while she was assembling the mask, I was surprised – I thought maybe she was new to her profession and this was one of her first patients. It didn’t dawn on me that Jacob was really in trouble.

Before I realized what was happening, there were at least six but possibly more, yellow-gowned medical personnel surrounding Jacob’s bed and standing in the doorway. The staff was dressed like minions because precautions were being taken in case he had a contagious virus (a common practice until anything contagious can be ruled out) and everyone looked the same. I didn’t realize that there were practitioners from the Critical Care Unit (CCU), Respirology, Respiratory Therapists and Complex Care huddled in the room assessing my son’s condition. I still don’t know who some of the people were. It was surreal.

I then heard the words that will remain etched in my brain like a key scrape on the side of a brand new car: “There is no air entry, I’m about to call a Code.”

A woman stood near my son’s head holding a mask over his mouth and nose. Someone else was squeezing a balloon-shaped device at the end of the tube attached to the mask. I leaned over the edge of the bed and rubbed Jacob’s arm as tears ran down my cheeks. I whispered to him that one day soon he would laugh so hard when he hears the story about how he scared so many people.

I moved away from the bed as the group of yellow-gowned people readied Jacob and his bed for the transfer to the CCU.

At some point, my friend showed up and helped me gather Jake’s belongings and wheelchair. She saw to it that all his “stuff” was moved to this new room. My singular focus was walking next to my son, trying to ensure he knew I was by his side.

I can’t remember what transpired next but I do recall thinking I was glad my husband was already on the airplane on his way home from his meeting in Europe. The last text I sent him before he boarded was Jake is sleeping well, he is comfortable and quiet.

Eventually, Jacob was settled into the CCU with a machine breathing for him and monitors beeping whenever his numbers dropped too low or rose too high. To say it was scary doesn’t adequately describe the feeling of helplessness I experienced when trying to find my 12 year old boy’s face almost completely hidden behind a huge mask. His eyes registered abject terror as the sound of the breathing machine hissed on each inhale and every exhale.

The experience was horrifying. We were forced into discussions that parents shouldn’t have to consider. Our daughters learned things about PMD that nine year olds shouldn’t know.

Three weeks after that terrifying morning, Jacob has recovered from what turned out to be a virus that would affect most people like a bad cold but because of his PMD-related challenges, almost clobbered him. He is still in the hospital but is getting stronger.

Throughout this chapter in our family’s history, we saw some wonderful instances of love and support. At times my phone was beeping almost non-stop with messages of encouragement, well wishes and offers to help. Our daughters’ days were busy and fun-filled by friends who wanted to ensure that Sierra and Jamie had pleasant things to focus on. Our fridge was stocked with fruits, vegetables, soups, meals, muffins, cookies and so much more. A good friend made school lunches for my daughters, and another friend coordinated their weekend plans so Andrew and I could spend the entire time at the hospital by Jacob’s side.

Since Jacob’s early struggles, I have been a fan of the adage: It takes a village to raise a child. Over these past few weeks, I realized that I am very lucky to be part of such a loving and caring little world of family and friends.

– See more at: http://hermagazine.ca/jacob-in-the-hospital-it-takes-a-village/#sthash.jbUy6UiO.dpuf

Felix the Golden Retriever – A Boy’s Best Friend

By Marcy White October 30, 2014

golden retriever

I am, and always have been, a dog person. My kids and my husband were not. When I wold stop to pet a dog, my husband would cringe as I let the dog lick my hand or jump on me. My daughters would stand off to the side, far enough away so that the pooch could not reach them – they clearly did not share my love of canines.

Jacob, my eldest child, was scared of animals in general.

Jacob, my eldest child, was scared of animals in general (our two cats, Spot and Spotsbrother, were an exception) and his feelings towards dogs particular bordered on phobic.

Jake loves our cats. At sixteen years old, Spot and Brother (as he is known to his friends) were around before Jacob was born so he grew up with them prowling around the house and climbing on him. Jacob’s face always lights up when our cats are near him. We have spent many hours pushing Jacob’s wheelchair around our house in search of Spot, or simply in an effort to follow Spot, as that activity was sometimes the only thing that would quiet Jake’s multi-hour screaming episodes.

Spot and Brother are great cats but they don’t listen very well. Despite repeated efforts to train them to stay with Jacob, they have minds of their own and do as they please. But, I thought, dogs can be trained and if Jake learned to like dogs, maybe he would enjoy the companionship and unconditional love of a canine friend.

Any time Jake spied a dog walking towards us when we were strolling around the neighborhood his face would blanch, his eyes would open wide and he would start to make the most heart-breaking moans until we crossed the street and the dog was no longer in his field of vision.

It was obvious that Jacob was not a dog lover but I was determined to change his mind.

We started slowly, very slowly, exposing Jacob to some well-trained dogs for very brief periods of time. Over the course of a few years, Jacob started to tolerate some well-behaved, mellow dogs. We gradually stopped having to cross the street if a dog was in the vicinity.

I started thinking about how the addition of a dog to our household would benefit all my kids. I began picturing a little dog curled up on Jacob’s bed and spending the night next to him. I envisioned walking our newest furry family member around the neighborhood, holding the leash in one hand and pushing Jake’s chair with the other.

I began talking to Jacob about getting him a dog and how much fun he would have with his new canine buddy. Gradually he warmed to the idea and was able to let me know that he wanted to name his future dog, Felix.

Jacob’s twin sisters had a different idea. Sierra and Jamie were opposed to us adding a dog to our already hectic household, citing their indifference to dogs (I never wanted to believe that any blood-relative of mind could not be a dog-person) and their concern for the well-being of their geriatric feline brothers.

I came across National Service Dogs located in Cambridge, Ontario.

After some research on my part, I came across National Service Dogs located in Cambridge, Ontario, an organization that trains Skilled Companion Dogs for children with special needs.

Following an extensive application process, which included a letter from Jacob’s physician and an in-home interview, we were informed that Jacob would receive a Skilled Companion Dog from this organization.

The dog that was selected for Jacob was a well-trained, lovable 68 pound golden retriever.

On a Wednesday night as I was preparing dinner, several months after the interview, the phone rang and we received the call we were waiting for: a dog was matched to Jacob and if I could make arrangements to come to Cambridge for training in a few days, I could bring home our newest addition that weekend. I was told that the dog that was selected for Jacob was a well-trained, lovable 68 pound golden retriever whose parents were championship show dogs.

The moment Felix jumped out of my car and my daughters spied his shiny, thick red fur, they were in love. Jamie learned that it possible to cry tears of happiness, as she did just that when she hugged him for the first time.

I was nervous for Jacob to meet the dog we spoke about for so long. Preparing Jake for living with a dog was very different from actually living with one. I wanted their initial encounter to be a positive one so I made sure Felix had some time to run around outside, play with my daughters and expend some energy before the two boys met.

With his leash still attached and plenty of treats in my hand, I walked Felix over to Jacob and introduced them. Felix sat next to Jake’s wheelchair and waited for further instructions. When he was asked to “visit”, our brilliant golden retriever placed his head in my son’s lap and ate a snack that was placed between Jacob’s index and middle fingers.

As Jake laughed, I exhaled the breath I was holding, confident in the knowledge that these two boys would be great friends.

Felix Accompanies Jacob to Medical Appointments

Several months after Felix’s arrival, Jake had a dentist appointment. On the suggestion of Randi, Jacob’s dentist, we brought Felix to see if Felix’s presence would help make Jacob feel more comfortable while his teeth were cleaned. With a slight amount of trepidation, I wheeled Jake with Felix beside him into the medical building, into the elevator, down the hall and into Randi’s office.

This was the first time I brought Felix along to any appointment, I was hesitant and unsure of what to expect. It was worth the gamble though. Felix was a great help to Jake and the office staff were wonderful in accepting Felix’s presence in the tiny examination room.

Buoyed by the successful appointment, once Jake was returned to our car, I called the pediatrician’s office to inquire as to whether I could bring my son for a flu shot.

As arranged, I called the office to let them know we had arrived in front of the office because the nurse agreed to administer the shot in the ‘relative comfort’ of Jake’s car seat. Within a minute or two, Cathy was standing next to Jake’s seat, the needle ready to meet its target. Felix decided this was a perfect time to lick Jacob’s left cheek to distract him from the shot aimed at my son’s right upper arm. Jacob did not feel a thing, other than the warm, moist slobber of Felix’s enormous tongue!

Felix has now been in our family for almost a year and a half. My husband who used to shudder as I bent down to play with a pooch, carries our dog up the stairs at night when Felix is too tired to walk himself. Jamie and Sierra, who didn’t understand they appeal of pooches now stop to pat any dog they see (after asking the owner’s permission of course) and Jacob, the boy who would scream in fear at the sight of a dog, now laughs when Felix stretches out beside him on his bed. Once again proving that Mommy (sometimes) knows best!

This post was originally published on hermagazine.ca


First Day of Middle School

First Day of Middle School – Two Perspectives By Marcy White September 26, 2014

J at school - May 15 2014


Nathan – First Day of Middle School – Morning Routine

On the first day of Middle School, Nathan rolls out of bed, brushes his teeth and puts on the new shirt and pants. He picks up his backpack, filled last night, with all the school supplies he needs. He walks downstairs and enters the kitchen, sitting down at the table as his mother places a plate of pancakes in front of him.

While he’s eating, his mom finishes packing his lunch and asks her son what snacks he would like for recess. Nathan doesn’t eat as many pancakes as usual, saying that his stomach feels funny. His mom thinks it’s probably because he’s nervous for his first day at the new school. She doesn’t tell him that hers feels funny too because she’s worried for him and hopes he has a great day.

Jacob – First Day of Middle School – Morning Routine

Meanwhile at Jacob’s house, Jacob opens his eyes and the first thing he sees is his night nurse. She smiles at him as he slowly awakens and cheerily reminds him that he has to get ready for his first day of Middle School. Jacob listens to his nurse talk about her first day at a new school as she lifts him out of bed and carries him into the bathroom. As she places him on the changing table, she adjusts the pillow under his head so that he is comfortable because he can’t move by himself.

She gently removes his pajamas and starts dressing him in the clothes his mom laid out the night before. She stops periodically and turns him on his side so that he can breathe freely – lying on his back makes it hard for Jacob to expand his lungs because of his rapidly progressing scoliosis. As soon as the dressing is complete, the nurse lifts Jacob and places him in his wheelchair.

While the nurse brushes his teeth and washes his face, Jacob starts thinking about school. His pulse races and the nurse can see the numbers climbing each time she glances at the oxygen saturation monitor on his right index finger. The nurse administers the final dose of morning medication through the tube in his stomach, removes the extension tube and closes his g-tube. It is the only way Jacob receives food, water and medication because he cannot swallow. She places the saturation monitor in its case, and attaches it to the wheelchair so it is readily available in case it’s needed during the day.

Jacob wishes he could tell someone that he doesn’t want to go to school, that he wants to stay home with people he knows instead of going to a new place without his friends from last year. But, he can’t. His vocal cords are paralyzed and he is unable speak.

Nathan – First Day of Middle School – Getting to School

At 8am, Nathan and his mom leave their house and begin the short walk to school. On the way, they meet up with Evan and his mom. Evan and Nathan were at the same school last year and are surprised to find out they will be together again.

As they near the school, the boys say good-bye to their moms and enter the building together. They are not in the same class, but agree to meet up in the yard at recess.

Jacob – First Day of Middle School – Getting to School

At 7:45am the night nurse leaves Jacob’s home and his mother takes over his care. She, too, talks about school and shows him the three bags that will be accompanying him. She points to the new big black backpack that is filled with his medical supplies including syringes, extra tubing for his feeding pump, a change of clothes, medication, a pill crusher and measuring bottles. A case of liquid food is by the door, along with his feeding pump.

At 8am the nurse who will be by Jacob’s side until he returns home from school rings the doorbell and announces that Jacob’s bus (it’s really a wheelchair-accessible van) has arrived. She is the same nurse as last year and Jacob smiles when he sees her.

Jacob’s mom wheels Jacob out of the house, up the driveway and into the van. As the bus driver ensures that all the safety hooks are engaged and Jacob’s wheelchair is fastened in place, Jacob’s mom and nurse place the bags and food in the van to be unpacked at their destination.

Jacob’s mom leans down to give her son a kiss on his cheek and waits for his usual smile. It doesn’t come today. Her insides lurch, she knows her son is scared. She is scared for him but understands that he doesn’t want his mommy to come to school with him. He is not a baby, after all. She tries to reassure him that he will have a good day and reminds the nurse to take good care of him.

The van door is closed and they drive away.

Nathan – First Day of Middle School – Butterflies

Nathan is ushered up to the second floor, down the hall, around the corner and into his new classroom. This school is larger than his previous one, the kids are older, bigger and louder. They all seem to know each other because they are standing in groups talking to each other, laughing and catching up with what they’ve been doing over the summer months.

Nathan is scared and the butterflies in his stomach seem to be growing exponentially as each new face enters the class. The classroom is larger than his previous one, and there are so many desks arranged in the room. He wonders what he can do to get out of here. He thinks he will never fit in and make friends.

He wants to fade into the background and observe from a distance, hoping nobody will notice him. He thinks the chances are pretty good for this as everyone seems to be too busy to care about the new kid. He takes a deep breath and reminds himself that he will probably make a new friend within the next couple of weeks, and that Evan will be waiting for him in the playground at recess.

Jacob – First Day of Middle School – Butterflies

Jacob and the nurse arrive at school. As soon as the bus driver wheels Jacob out of the van, a petite woman with a big smile on her face rushes over to him and welcomes him. Jacob and the nurse are directed into the building and wait for the elevator. At the second floor, they are ushered out, down the hall, around the corner and into the classroom. Everything is happening so quickly, Jacob doesn’t even have a chance to process what’s going on.

Although Jacob can’t talk, he understands the conversations around him and he certainly notices all the eyes trained on him. His back starts to hurt but he tries not to show his discomfort around all these new faces. He can’t hide, he can’t use his hands to shield his face and he can’t slink into a corner in the back of the room.

Jacob hopes, in vain, that someone will wheel him out of the room, around the corner, down the hall and back into the safety of somewhere familiar. He wants to fade into the background and observe from a distance, hoping that nobody will notice him. He realizes though, that the chances of his wish coming true are pretty slim.

Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry until her son, Jacob was born in 2002. Her academic degrees did not prepare her for caring for Jacob, who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months-old, Marcy has become an advocate for her son and furthering PMD research to help find a cure. Marcy has published many articles about Jacob that have appeared in such publications as the Globe and Mail, Canadian Jewish News and Exceptional Parent. She recently published her first book: The Boy Who Can: The Jacob Trossman Story. She co-founded curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.

This post was originally published on hermagazine.ca