A brother's story inspires safe haven for play

By Louise Kinross

Daniel Scott (above left) coordinates Holland Bloorview’s Ronald McDonald playroom. The early childhood educator also runs the hospital’s children’s advisory—a group that includes kids as young as three weighing in on how we provide care—leads parenting workshops and facilitates a night for siblings of children with disabilities. Daniel—known for his dapper bow-ties—has an older sister who developed epilepsy as a teen. We talked about how his own experiences as a child in the medical system inform the environment he creates for families in our playroom.

BLOOM: Tell us a bit about your sister.

Daniel Scott: Samantha (Sam) is 10 years older than me and she was typically developing until she began having grand mal seizures at around age 13. She lets out a guttural scream before she has it, then she collapses and has convulsions. The seizures last for about two minutes and then she’s unconscious for five to 10 minutes. When she wakes up she doesn’t know where she is or who anyone is. It usually takes several hours before she starts to remember details, and sometimes parts of the day never come back to her.

BLOOM: That must have been frightening.

Daniel Scott: When I was really young the seizure itself was very scary and it comes out of nowhere. You can be anywhere and it can happen at anytime. Once I was in the car with my sister and mom and one of my best friends and I had to explain to my friend what was going on and try to help her understand and try not to be embarrassed. And all the while I was still worrying about my sister.

BLOOM: What kind of treatment did she get?

Daniel Scott: This was in the '90s and the medications that were available then turned you into a zombie. When Sam was in high school she ended up on a lot of heavy meds. She said it was like walking through a thick fog everyday and you couldn’t focus on anything and her memory was basically non-existent. She was failing classes. 

Once she had a giant seizure in the middle of our high school. She was walking into class and fell into a door frame and split her face wide open. After being publicly humiliated as a 17-year-old girl, the doctor sewed her bangs into her face. Then the nurse stuck herself with a needle so my sister had to go back in for HIV blood testing. I remember the doctors being incredibly inconsiderate and blunt and not supportive in the way they delivered news. Often times they would say: “We just don’t know.”

BLOOM: How did Sam’s seizures affect your family?

Daniel Scott: My mom was a single mom and she worked all the time to try to afford being a single mom. It was challenging. My sister and I were alone a lot and there was always the chance I had to be ready to call an ambulance and make sure everything went okay. When my mom worked nights, I often went to stay with my grandparents and dad, so I wasn’t doing everything. Sam was seen at SickKids and by other specialists so there were a lot of long drives back and forth from my hometown of Minden to Toronto and sitting around in waiting rooms. My mom was great at coming up with car games to pass the time, but once we got to the specialist's office, there was nothing. If there had been a playroom it would have been a lot easier for us. Playing video games for an hour would have been great.

BLOOM: Did they ever find a treatment that helped your sister?

Daniel Scott: When Sam was 20 and had graduated from high school she made a conscious choice to come off all medications. She said she’d rather have monthly seizures and be able to remember and function. In her thirties she found a better blend of medication and the seizures also seemed to subside. She’s now married with two children. My brother-in-law has only seen three seizures in the 10 years they've been together, so I’m still the main point of contact if she has one. I've also tried to help my niece and nephew understand what to do if she has a seizure while they're home alone with her.

BLOOM: What is your role in the playroom?

Daniel Scott: Our goal is to build a warm, welcoming, therapeutic play environment that’s a safe haven in the hospital. It’s a safe space away from the clinical world. Siblings can come here to get away from boring appointments and waiting rooms and patients can come before, after, or in-between their appointments. 

We make the environment as non-medical as possible so that they can get away from whatever is bringing them to the hospital medically. Some families use the playroom as a reward: if their child gets through a tough therapy session they know they get to come to the playroom afterwards. Parents feel more comfortable talking to me because we have a different dynamic. I’m not a clinician or doctor or therapist.

BLOOM: What do parents talk to you about?

Daniel Scott: We’re often the first place parents come after getting a diagnosis for their child. We talk about things they’re struggling with. Working as part of our client and family integrated team is a great opportunity to be a hub for families. I can direct them to the family resource centre and to people and places where they can find the resources they need to help them on their journey. I don’t know all of the answers, but I can point them to someone who does.

BLOOM: Can you tell us about the sibling nights you organize here?

Daniel Scott: June Chiu developed the concept over a decade ago after seeing her children go through the medical world while their sister was a client here. She knew that I understood what it was like and we worked on it together in the years before she retired. 

I love it. It’s an opportunity I wish I’d had as a kid to share stories in a room where other people get it. One of the big pieces I advocated for is a panel where parents can hear adult siblings talk about their experiences. It’s so important to see what coming out on the other side can look like for siblings. 

We share our stories and what our experience is, and then parents ask questions. The first year they were incredibly candid, like ‘Do you resent your sibling?’ or ‘Do you resent your parents?’ They were very concerned about how traumatic the experience could be. We aren’t necessarily representative of the whole sibling population, but in general we said it has been challenging, but that we love and respect our brother or sister so much. I admire my sister’s courage and I think we’re so much closer as a family because of what we’ve been through. My mother and sister and I are each other’s support system.

BLOOM: Siblings also play an important role in the children’s advisory council you lead.

Daniel Scott: We had horrible medical experiences working with my sister and I’ve seen what bad client care looks like. Part of what I’m dedicated to is being the best we can be at delivering client care. It’s all about the way things are presented and how they’re handled. The children’s advisory is an opportunity for kids to be part of the change process. It recognizes that siblings are often here enough that they know just as much about the system, and can inform our decisions as well, as the clients and parents can.

Here's a more current picture of Daniel and his sister Sam.

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We need disability rights, not days

By Louise Kinross

Today is International Day of Persons with Disabilities.

I’m not a fan of awareness days.

I know they’re unlikely to prompt us to unearth the unconscious biases we hold toward marginalized groups.

These are unstated stereotypes we pick up as children, as if by osmosis, and which get passed down from generation to generation.

They explain why a French study in 2012 found that adults who say they accept children with disabilities carry a negative bias towards them that only shows up in implicit association testing, which gets at our thinking at an automatic, unconscious level.

The theme of disability day this year is “Inclusion matters.”

Last month I read this brilliant Time essay about inclusion and race by author Annie Murphy Paul: The Yale controversy is really about belonging.

It's about how Yale University's intercultural affairs council asked students not to wear costumes at Halloween that mocked a culture or ethnicity. When a staff member pushed back, saying “if you don’t like a costume someone is wearing, look away,” minority students protested.

“I never thought about my race,” writes Annie of her time as a white student at Yale in the early 1990s. “I never had to. Nor do I remember thinking much about the fact that almost all of the servers at the [Freshman Holiday Feast] were black, or that none of my professors were.”

What was really at stake in the costume uproar, she writes, was whether students of colour felt they belonged.

In fact, studies show that a sense of belonging is critical to learning, says Annie, whose book Brilliant: The New Science of Smart will be published in 2017.

“We humans are social beings, wired for membership in a group,” she writes. “Mental resources devoted to monitoring one’s environment for cues of rejection, to fending off suspicions that one doesn’t belong, are mental resources that can’t be allocated to understanding and remembering academic content.”

Bingo! I thought. It so perfectly applies to inclusion and disability. For students with disabilities who are mainstreamed, but in name only, or educated separately from peers, how do feelings of not fitting in interfere with the ability to learn?

That made me recall a Holland Bloorview review of 56 studies that show children with disabilities have fewer friends and smaller social networks than their peers.

Last week University of California scientists reported on how loneliness changes white blood cells, making them less able to fight infection and explaining why socially isolated adults are 14 per cent more likely to die early than peers.

Research groups in different countries are studying friendship, or the lack of it, in disabled children, young adults and even seniors.

But here’s the problem. I keep reading that they want to define what friendship “means” to children or people with disabilities.

I think that’s completely backwards. Because I think friendship means the same thing to all human beings. 

People with disabilities don’t have fewer friends because they have a different concept or understanding of friendship. Yes, there may be significant communication and physical barriers. But the main reason they have fewer friends is because of those unconscious stereotypes our culture continues to root in children’s minds, the ones that say: “disability is less and difference is not okay.”

Why don’t we instead study children who stigmatize others? Why don’t we study how stereotypes, about race or disability, influence friendship patterns? Why don’t we study the behaviour of people in privileged positions who exclude? Why haven't we figured out how to make people recognize their own deeply held prejudices, much less to change them? In effect, why is all of the research focused on the marginalized group, rather than the marginalizers?

“Simply put, my existence is not valued,” wrote William J. Peace last week. Bill is a visiting professor at Syracuse University who was paralyzed at age 18 and writes at Bad Cripple about life in a wheelchair.

“First and foremost bipedal people observe all the things I cannot do. Bipeds are wary of the handicapped. We are different. Our identity is spoiled. Stigma abounds. Wheelchair use is always framed as being bad. I am wheelchair bound. Oh, the tragedy! Let’s not upset the handicapped. Let’s treat them as special. Special equals segregation. Society does not want nor value wheelchair lifts on buses. Let’s create ‘special’ transportation in the form of substandard para-transit."

Bill was writing about assisted suicide legislation, and how it puts people with disability at risk. “I do not suffer any more or less than the typical biped,” he writes, yet a doctor offered "to end my suffering by forgoing life-saving antibiotics.”

Last month, young adult author John Green (The Fault in Our Stars) posted an interesting vlog (the video equivalent of a blog) in which he discusses his mental illness. 

It takes a while for him to get into the topic, but be patient.

“I find it difficult to talk about my own experiences with chronic illness because the central way we imagine sickness as a thing that we must ‘conquer’ and then put behind us doesn’t really apply to chronic illness,” he says. “Like when you go to the store to get a card for a sick friend, you go to the “Get well soon” section. For people living with chronic illness, it isn’t a question of ‘getting well soon.’"

In children’s rehab, there's a language of "potential" that also assumes the child gets "better" or changes in some fundamental way. 

 
Jennifer Johannesen refers to the “tyranny” of chasing her son's potential in a fascinating piece in the December issue of Brainstorm, a newsletter about ethics, neuroscience and society.

“Our therapists were creative and energetic,” she writes. “Together we heroically embarked on a years-long journey to help Owen ‘reach his full potential.’” It didn’t seem to matter, she writes, that Owen, who had severe, multiple disabilities, wasn’t meeting any of the goals set for him, or that she was feeling increasingly futile.

It seems to me that “potential” is an onerous burden we place on children and people with disabilities in a way we don’t their peers. No one is walking around questioning whether I have achieved my potential, or lamenting the ways in which I haven’t (and I’m sure there are many, please don’t point them out). There is something about “potential” that works against seeing a person’s value as inherent and unchangeable. Am I more worthy if I reach my “potential?” Who decides what my “potential” is?

A reader on Jennifer's Facebook page posted this comment on her piece: "Hmmmm, interesting perspective. I often write letters advocating for services/accommodations/interventions using 'to maximize his potential.'"

"We had to play up potential all the time, to get services, equipment and funding," Jennifer wrote.

"I agree that referring to maximizing 'potential' is necessary in advocacy," I responded. "Why? Because in our culture, potential means 'value.' It has currency. Children can be denied therapies because it's thought they have no ability to 'progress.' It's all an interesting reflection of our culture no?"

Potential is always focused on something in the future, some way in which we’re going to become ‘new and improved’ versions of the human beings we are now.

It doesn't look at how systems, environments and attitudes today privilege some and disable others.

"Despite 40 years of progressive legislation designed to empower people with a disability and make our lived environment barrier free most people are uncomfortable in the presence of those with an obvious disability," Bill writes. "Moms pull their kids away from me in the supermarket and tell their children 'watch out for the wheelchair.' Handicapped seating is often substandard and in the worst location in various auditoriums nation wide. It is never easy to navigate restaurant aisles. Purchasing a ticket to a sporting event requires multiple phone calls so a given venue can provide disabled patrons special service. Not a day goes by when I am not made aware of my disability. The people I know with a disability are equally aware. We know a cultural divide exists between those with and those without a disability."

Sometimes the hidden stereotypes we carry about disability come tumbling out in the most unlikely of places.

This week the president of America’s largest teachers’ union apologized for referring to students with disabilities as “chronically tarded” in a speech she gave at a Campaign for America’s Future gala.

Her excuse? She meant to say “chronically tardy” but inadvertently said “tarded” as in “retarded.” 

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For Kate

Julie Drury has written a number of times for BLOOM about raising her daughter Kate, who had a rare mitochondrial disorder. Most recently, Kate had a bone marrow transplant. Kate passed away last night. She loved pink. Please hold her and Julie and their family in your thoughts.

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BLOOM media round-up

By Louise Kinross

Last week we posted Ho, ho, humbug about how toy shopping can be a difficult time for parents whose children have disabilities.

Every year Ellen at Love That Max creates a list of regular toys that may work well with children with special needs, based on recommendations from therapists and parents. She just posted her 2015 list.

We had a comment on our post about how expensive specialty toys can be, particularly for a single mom. If you have any ideas on how to find great deals, or perhaps gently used toys, please comment below.

We also heard from Holland Bloorview family leader Susan Cosgrove about how she changed her gift-giving routine to make it manageable for her son with autism. 

Although it's in a different way, the holidays are a challenge around here too. I think it's hardest on Liam who is 12 and autistic. He gets so wound up about his Christmas list and wondering if I will be able to find the things he's asked for. He's not being greedy... But surprises and unpredictability stress him out.

Last year I let him choose and purchase his own gifts. One month before Christmas I give him a $100 budget. We purchase his gifts together (sometimes online). This year he chose Toys R Us on a Saturday. 

I wrap his gifts and put them away. He knows what he's going to get and plans what order he will open his gifts Christmas morning. For my own sake I wrap up a few surprise gifts, but we don't talk about those beforehand. 

It's amazing. It reduces his anxiety by 90 per cent, easily. He knows what's coming and plans his Christmas morning. I think it's a great system and could work for most kids who have anxiety. It's a small thing but it's been life-changing for us. 

Let us know if you have other ideas for making the holidays merrier. Here are some links you may find interesting.

Ontario's sheltered workshops to close forever, The Toronto Star

How one Paris start-up is becoming an Uber for people with disabilities Mashable

Don't get angry, and don't get even Paul Levy, former CEO of Beth Israel Deaconess Medical Centre in Boston, on why anger in negotiations doesn't work on the world stage or among senior clinicians in hospitals.

Study says disabled face clear job bias Boston Globe

How high-paid bosses blew it The Toronto Star
"...While the Community Care Access Centre bosses were getting massive pay raises, many of the therapists, personal support workers and nurses who actually provide care to patients were earning less than $25,000 a year and hadn't seen a pay raise in years."

Special needs traumatic stress disorder Seizing Hope
This parent notes that there is no P (post). "We get up and live these scary moments every day."

Wheelchair users 36 per cent more likely to be killed in traffic than pedestrians The Atlantic CityLab

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Ho ho, humbug? Toy shopping is hard for special-needs parents

By Julie Brocklehurst

There's a natural desire to pass family traditions down to the next generation, and I always thought I would… until my son, Brennen, came along, rocked my world, and changed how we do things, including the Christmas holidays, entirely.

For the first couple of years of Brennen’s life, I would dread going to toy stores. Who am I kidding? I still do. I avoid them at all costs, knowing that there is very little available that Brennen can “play” with.

Christmas shopping has become a challenge, and though I try to resist it, every year I inevitably find myself in a toy aisle, tears streaming down my face with the realization, once again, that I am living in a starkly different world. While I dream of wrapping up the one thing my child will adore, the one thing that will attract his attention, ignite his creativity and give him opportunities to play and learn and grow, it is unfortunately not that easy. 

Finding products and toys that will work for Brennen is difficult. I look at items, analyze their potential, and ultimately decide that they are not suitable—that he can’t physically manipulate them on his own, and will be a complete waste of money. Sometimes I will purchase the toy anyway, in hopes that some miracle will happen and his skills will improve. 

Sometimes I just want to feel like any other parent shopping at Toys R Us, who can pick out a present for their child without having to stress about whether or not it will be used for its intended purpose, or be added to the pile of stuff that goes into a closet and never comes out.

Christmas is different with a child with special needs. Brennen can’t write a letter to Santa. He can’t tell me anything that he would like to ask for, or what he hopes to find underneath the tree on Christmas morning. He can’t get up in the middle of the night to exclaim his excitement that Santa has come, and he can’t unwrap his own gifts. 

I don’t even know how much he understands about Christmas or Santa Claus or traditions or magic, but we do it anyway. We bring Christmas into our home and we celebrate with all of the things that a little boy should have around him—love and light and wonder and joy. We do it for him, and we do it for us, as a family. 

It is important for Andrew and I to carry on with some of the things that meant a lot to us growing up. We love Christmas! I still get giddy thinking about my favourite Christmas songs (so many I can’t pick just one!), favourite Christmas movie (It’s a Wonderful Life), and favourite Christmas treats (my Mom’s (used to be Nan’s) apricot raisin cake).

My most cherished Christmas memories from when I was a child are never related to a present. They are memories of going to mass on Christmas Eve with my father and grandfather, Dad reading The Night Before Christmas to my sister and I no matter how late it was (every year until we moved out), having turkey dinner on Christmas Day with my Mom’s family, and a sing-along at my parents’ annual blow-out Boxing Day party (that is still a tradition today!). My favourite memories revolve around people, family, spending time with loved ones and celebrating the holidays together. This is what matters most to me, and this is something that I can continue with my own little family. 

Brennen enjoys the sights and sounds of Christmas. He loves to look at the twinkly lights on the tree, and we have Christmas music playing constantly. He is happy when he is surrounded by people, and he certainly knows that he is loved.

We have also started some new traditions. On Christmas Eve, instead of going out, our family and friends now come to our house to see Brennen before he gets tucked into bed for the night. Our schedule of events now includes the Janeway Children’s Hospital Christmas party, Easter Seals Breakfast with Santa, and the Rainbow Riders Live Nativity. These have quickly become our favourite and most anticipated events of the season!

We don’t go overboard with gifts. On Christmas morning, we take time to help Brennen unwrap each one, enjoying the sound of ripping paper, and the anticipation of what’s coming next! We focus on the importance of what the holidays are truly about—family and togetherness, kindness and giving, magic and wonder. 

 
If I were to give advice to parents of children with special needs this Christmas, I would have to say not to put too much pressure on yourself, and don’t expect things to be ‘perfect.’ 

The holidays are stressful for all parents, but our children’s special needs add an extra degree of difficulty. Try not to get caught up in the details, and just enjoy the time with your family. It may not look the way you had envisioned it, and it may not run as smoothly as you had hoped, but it can still be special. Focus on the positive things, and think of all the things you are thankful for. Find happiness in your child! 

Bruce Templeton, who has visited with 1,500 children dressed up as St. Nick, writes in The Man in the Red Suit: "It's your presence with your family that matters a whole lot more than anything that's under the tree. It's your presence, not presents that counts."

Julie Brocklehurst is a writer, an advocate and a mother to a little boy with cerebral palsy. She created her blog Tiptoeing Through as a place to share some of her thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Every month in her Tulip Tales series, Julie features a child with special needs from Newfoundland and Labrador and shares their amazing story. Julie is a director on the board of the Cerebral Palsy Association of Newfoundland and she runs a child care program for children with disabilities.

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A letter to my Bubbie

Laura Rosen Cohen has a teenaged son with a rare genetic disorder. This is a letter she wrote to her late grandmother, who was and remains a formative and towering figure in her life and who sadly passed away too soon.

By Laura Rosen Cohen

Hi Bubbie,

I started this letter to you a hundred times or more in my head, and each time, I started crying, so I had to stop, and try to focus on the positive until my breathing became more rhythmic, my limbs a little more heavy and relaxed, giving me a chance let my body and mind rest, and sleep away my worry for a blissful few hours while I have help at night.

When morning comes, and the sun returns to its rightful place on the new day’s horizon, my fears start creeping in again. I wake up, generally thankful and truly grateful for the new day and its blessings. But I confess, I look into the mirror and see a middle-aged woman looking back at me. That woman no longer has a special needs child, she has a special needs teenager, who will soon be her developmentally disabled adult child, a dependent adult different from other adult children—always. 

We had our first “transition” meeting, and I guess that has been sort of a trigger. The road from disabled child, to teen to adult is a bumpy one and I have to admit how scared I am to travel upon it. I’m driving into unchartered territory, toward the time in my life, to a destination called No Empty Nest, and will stay there for as long as my husband and I are well and able. I wish you could have met him, and my kids.

Even though I know you’re with me all the time, watching over me, I wish I had you here to talk to, really talk to. I wish I could hear your voice, really hear it out loud, and not just in my head saying “Laura, you are going to be OK, you can do this.” I wish you would make me a cup of sweet, milky tea in those white tea cups with the pretty purple flowers on them, and your banana bread, and we could sit in your kitchen, and let me feel your soft hands, and you would be humming old songs, and giving me more bits of wisdom that would carry me through my fears now as they did even then.

I guess what I’m saying, Bubbie, is that I’m scared. I’m scared of finding adult services and programs and doctors. I’m worried about how independent he will be even though I know worrying will not win any more independence than what he is actually destined to achieve. 

I’m concerned about making it as easy as possible for my other children to lead full and rich lives, with as much support as my husband and I can possibly generate to give them as much freedom and peace of mind as possible for when they start to navigate my son’s life on his behalf when we are no longer able.  

I’m worried about him having a meaningful life. And I’m sometimes tired, sometimes I grow weary from the constant need to project strength, to lead by example, to express a general sense of optimism and gratitude for what I have to others even when my reserves become low themselves or in the moments when I find myself momentarily and regretfully bitter, or even sadly—resentful. Yes it happens. These moments are fleeting, but they do happen. 

I wish I could sit back in your den and talk it out with you. If I close my eyes I can feel the fabric, and see the sun shining through the windows and hear a few notes on the organ, and hear you singing.

I know you know exactly what scares me before I go to sleep so I’ll be talking it out with you frequently, even if only in the peaceful no man’s land between consciousness and dreaming, when the line between your voice and mine converge into a dreamscape, as I try to retain and remember your sage advice and our conversations as dawn breaks and a new day begins.

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Why home nursing is not respite for one mom

By Marcy White

It looks good on paper.

After a year in hospital with machines helping him breathe and tubes sucking out mucous that clogs his airway, my 13-year-old son Jacob, who has a rare neurodegenerative disorder and is prone to respiratory infections, was discharged last summer with 24-hour nursing care in our Toronto home.

But aside from the fact that nurses can cancel at a moment’s notice—leaving parents like me to pull all-nighters so my son doesn’t choke to death—we’re facing alarming incompetence when they do show up.

Jacob has had registered nurses care for him every night since he was discharged as a three-month old baby. In those days, our challenges were nurses who fell asleep, a nurse whose eyesight was so poor she had her driver’s license revoked, and the one who was arrested for shoplifting at Winner’s when she hid items behind my son’s back on a walk.

Talk to a family whose child relies on home nurses and most have a story or two about workers who fall asleep during night shifts (I’ve never heard of anyone being disciplined because of it). 

But in the last few months, the mistakes nurses have made while caring for my son at home have alarmed me beyond measure.

One fell asleep at 3 o’clock on a Saturday afternoon. When I woke her up, she apologized, saying: “I’m sorry, I took too much codeine.”

Another nurse placed food from her fingers in Jacob's mouth, despite the fact that Jacob has always been fed through a stomach tube because of life-threatening breathing problems. At the time, he also had a collapsed lung and required frequent suctioning and oxygen. “Everyone should be able to taste food,” she explained.

There’s been a nurse who couldn’t speak English, one who repeatedly poked him in the eye and accidentally wrote on his face with pen, and one who’d never suctioned a patient before.

Another nurse thought 140 mg of medication was equal to 1.4 ml of liquid. She didn’t realize that one measurement was for solids and one for liquids. She thought they were interchangeable.

A day ago Jacob fell out of bed onto a hard tile floor because the nurse had him too close to the edge and the railing was down. Aside from a lot of crying, I’m not sure how he didn’t break something. When I reported this to the director of the nurse’s agency, she responded: “Thanks for letting us know. We will log it in our risk file.”

The nurses I'm writing about still work with the agency that’s the largest provider of pediatric nurses in Toronto. Prior to welcoming them into my home and introducing them to my son, I was assured that they had the qualifications and experience necessary to safely care for Jacob.

We have met a handful of wonderful, caring and skilled nurses. But although we’re funded to receive round-the-clock nursing, we can’t get consistent, competent care. Everyone involved knows this, but excuses are constantly made.

Until something as serious as death can be attributed to the malpractice of a home nurse, I’m afraid the system will continue to ignore the danger faced by the most vulnerable patients like my son.

Because of Jacob’s medical fragility, he is always at risk of choking. His breathing problems are constant and we rely on the skills of proficient nurses to clear his airway and administer oxygen and other medications when he turns blue. There is little room for error or hesitation when his oxygen levels plummet to dangerously low levels.

It’s safe to say that I’m barely hanging on at this point. I actually parked my car on Avenue Road the other day and as I was going into the bagel store I realized that not only did I leave the keys in the car, I left the car in park, running! A few days ago I went to pick my daughter up at gymnastics at night and ended up at her school by mistake. I am exhausted. I even have dreams about being tired. Perhaps it will be me who is hospitalized next.

Despite families like ours receiving funding to cover round-the-clock nursing, there’s no respite when you’ve witnessed many serious errors in your child’s care and a nurse “no-show” (with no backup) is just a call away.

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.

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