Two years ago, as I railed against the injustices Marshall faced in the only way I knew how (by being angry), Bridget took it upon herself to approach a negative playground interaction by introducing Marshall to a classroom of young students. There, kids asked questions in a safe space, and Bridget educated rather than eviscerated, which is what my brain would scream to do all the time.
I followed her lead and brought Marshall into my own classroom late that school year. It was the most anxious morning of my life, wondering who would react how and maybe it was a bad idea and things were going to go horribly wrong and oh my god why did I do this.
Well, unsurprisingly, it turned out much better than I had predicted. Sure, I still lost a few kilograms of sweat that morning, but it was an overwhelmingly positive experience for me. As for the impact on my students, that’s harder to say. I could guess, but the most tangible evidence that it made an impression is that those students – now in grade five or six – still ask how Marshall is doing on occasion.
Recently, Marshall came back to my school to meet several more classrooms of third- and fourth-graders who recently finished reading Wonder at school. When he last came into a classroom here, Marshall’s life – and my outlook on the future – was starkly different. He had no fingers. I believe he had just started sitting up on his own. Walking was still many months away. He could not hear clearly. Sleep was still coming in one-hour bursts every night. I re-read a few early posts from that time, and the words are like a sleep-deprived, anxiety-ridden nightmare.
I walked Bridget and Marshall to the first of two classrooms earlier today. I excused myself and then walked away to finish some work before turning around and watching secretly from the hallway, as far from the door as possible. I watched students learn something new in the moment Marshall sat down on the little blue chair at the front of the class. Marshall, of course, had no true grasp of the situation, so he looked around quietly, listening to his mother introduce my little muffin to the curious children seated in front of him. I lingered a bit too long, and in the course of his scanning the walls, he saw a face he recognized.
“Dadda,” he called out as he waved his little left hand at me. I smiled and walked away, caught peeking by the clever little monkey.
Early Tuesday morning this week, we made our way downtown to a civic building where a photo campaign is taking place. See Beyond My Face is part of AboutFace’s campaign to increase awareness around living with facial differences. Marshall’s portrait is one of many on display in the building’s foyer, and we joined other families at the launch event. Like the other photo subjects, Marshall’s has some words about his facial difference printed beneath his image (thank you to Heather Davidson-Meyn of Fun Love Photography for taking his portrait). For Marshall, unlike his older peers, the words printed are not his, but mine.
Marshy’s caption was taken from some writing I did about him in the past, and upon reading it that morning, I was struck by the difference between my tone and that of the men and women who have written about their own experiences.
My words, though recent, are still full of anxiety and fear about how Marshall is treated by people who don’t know him. I wrote about girding myself against pointing and teasing and protecting him. In contrast, other subjects’ captions are more positive, confident, and hopeful. That’s missing, still, from my daily thought processes unless I make a conscious effort not to dwell on negative experiences.
I realize that Marshall cannot yet speak for himself, and that I have taken on the role as his public advocate, but my eyes were opened Tuesday morning. My goal as his father, and as Quinn’s father, is for my boys to grow up feeling loved, happy, and confident. My words on behalf of Marshall don’t convey that. Two and a half years later, I’m still thinking about many of the same things that were on my mind then. Of course, I have fewer fears about his immediate health and well-being, fortunately – we are very fortunate in that regard – but I’m clearly still dwelling on things I need to get past.
I’m someone who holds onto things from the past and lets them have power over me instead of learning from them and moving on. When I compare the words I have spoken on my son’s behalf, they do not sound like the words that have come straight from the minds and hearts of people who, like Marshall, are living with a craniofacial difference.
All of this makes me wonder again whether I have should be putting Marshall out there before he can decide for himself whether or not he wants to be written about and put out there for, potentially, the world to see. Throw in the ever-present fear that his photos will be co-opted for some awful meme, and it’s enough for me to step back from Facebook. How do I answer him if he one day asks, “Dad, how do you know whether or not I wanted you to write about me on the internet?”, or “Is there any way to erase everything you wrote?” On the internet? Probably not.
I have that constant fear that I’m doing it more out of my own fears than for him. Now that the radio piece and the magazine article from earlier in the year have happened, there is definitely no hiding that part of my personal life and separating it completely from my professional (or even just “outside-of-the-house”) life, which is what I have tried to do for two and a half years so that I could make it through each half of the day emotionally intact.
This is a long and entirely obtuse and rambling way to say that despite all the doom and gloom that gets into my words, Marshall’s life does not, ironically, reflect my words (Can someone actually tell me if that is irony? Alanis Morissette effectively destroyed the word’s proper usage for everyone approximately my age).
He is doing well. He is happy, healthy, and hirsute (come on – give me the alliteration, right?). For all that I still wish life for him was different (there I go again…), I can’t imagine not having him exactly as he is – beautiful, funny, and my little boy.
(I am listening to a piece on CBC Radio’s Metro Morning about the photo campaign and AboutFace as I type this. For all of the beautiful, wonderful people who spoke about their craniofacial differences on the radio, I love you all, and you are strong – stronger than most of us will ever have to be.)
Up front, I will admit that I am completely incapable of scheduling and keeping track of Marshall’s health care. Left to me, he would miss most of his appointments. In case anyone is struggling with keeping track of what medical care your child with Apert syndrome might need, I’m going to try and keep an updated list of the facilities and professionals who are part of Marshy’s care.
If you think I might have missed an important area of care, please let me know and I will add it to the list. Note also that care and certain procedures offered differ in various parts of the world.
Plastics – syndactyly release; eventual cranial and possibly facial surgery
ENT – tubes for drainage of ears; tonsils and adenoids removed; partial septumectomy; monitoring hearing along with audiologists
Orthopedics – monitoring lack of normal shoulder range
Opthalmology – monitoring vision and checking for scarring due to inability to fully close eyes at night; monitoring pressure on the eyes (an indication that skull surgery is necessary)
Respirology – sleep studies to determine severity of sleep apnea and to find possible solutions such as using a CPAP machine
Neurology – using yearly MRI scans to check for increased intracranial pressure and enlarged ventricles
Dentistry – dental and possible jaw issues being monitored
Cardiology – apparently, heart issues are common; Marshall’s echocardiogram at 9 months did not indicate any heart problems
Occupational Therapy – monitored and lead the recovery from his syndactyly release (healing from skin grafts to his hands)
Outside of the Hospital
Speech and Language Pathologists – this is key, especially since many of our children are late to hear or speak; look for courses on how to work with your child to develop language skills
Occupational Therapy – home visits to work with Marshall on using his unique and stiff fingers; strengthening his arms and shoulders
Family Therapists and Social Workers – there is no shame in taking to people who can guide you through the powerful emotions that are inevitably a part of raising your child, as well as the effect it can have on siblings
Hearing – there are many options for assistive hearing devices you may need, in addition to devices that will your child’s teachers may need in the classroom
Government Grants – there is help out there depending on where you live; Canada has a few provincial and federal aids available. If you need help filling out an application form, let me know and I’ll try to help.
Schools – As a teacher, I can tell you that some schools may try to give up on your child. Do not let them push you around. Advocate loudly until they can do it for themselves. If you ate having problems with your school board being unsupportive, send me a message with any questions and I will answer them to the best of my ability.
AboutFace – without their emotional support, I’m not certain I personally would have survived the fear of the unknown. Take a look at their website. These are beautiful parents and families who can guide you through the scariest and hardest moments.
Facebook – there are several private groups where news, questions, and tears are shared. Meeting and talking to others who have gone through what our family is going through had been enormously helpful.
To kill time on subway rides, I used to imagine what each rider’s life might be like. Married, kids, pets, jobs, worries – I would make it all up. There were usually some sordid details, and happy circumstances were rare but special.
This week, we spent a little time at the hospital for appointments and checkups (no cavities! hearing is normal! and I didn’t have a Subway sandwich!). While walking down the main hallway, something must have triggered my brain, and it started playing the subway game. The Hospital for Sick Children is not the ideal place to play this game. I watched a mother, probably exhausted from a long, sleepless night, help her daughter go for a little walk. She has Down syndrome and is going through radiation treatment. As soon as I started imagining her thoughts, I had to shut it off. I don’t know how many of the parents I pass by at the hospital do it.
As for the children, especially the young ones, you can tell many don’t know what’s going on quite yet. The older kids, though – they probably know. And I’ve noticed that many are more quiet and reserved than their peer group. Sure, they might be in pain at the moment, but something tells me it’s not just that. I wonder if they are quiet in order to blend into the background, to not be noticed.
Marshall, at the age of two, doesn’t give a damn. He’ll wave and call out to every car that passes our house. He smiles at every dog-walker, and tries to make friends with anyone who will let him. He doesn’t hear the kids who whisper or, as I heard the other day, “He looks like a pug!”
Even at the hospital, though, you see examples that give provide hope. I saw you the other day at the dental clinic on the service floor. You were at the hospital alone. I have never met you, and at first, all I knew of you was your voice. There was a mellifluous quality to it, and your vocabulary was stellar. I was sitting in the small waiting room off to the side of the main area, my eyes closed for a quick second while Marshall played with his dump truck. You were also so funny! The way you were engaging and interacting with the office administrator – you were quick, and your voice so confident. I opened my eyes to see who was talking, and there you were!
I saw you the other day at the dental clinic on the service floor. You were at the hospital alone, a rarity in a children’s hospital. I have never met you, and at first, all I knew of you was your voice. There was a mellifluous quality to it, and your vocabulary was stellar. I was sitting in the small waiting room off to the side of the main area, my eyes closed for a quick second while Marshall played with his dump truck. You were also so funny! The way you were engaging and interacting with the office administrator – you were quick, and your voice so confident. I opened my eyes to see who was talking, and there you were! Still a teenager if you are still accessing services at a pediatric hospital, a young black man, exuding confidence. And you also have a facial difference. Without staring, I have to admit I eavesdropped on you for the next minute, just to hear you talk. I saw you later that morning while we were coming down from Marshy’s ENT appointment. You must have been on your way to another of your appointments. You had a self-assuredness and familiarity with the hospital that was at once an impressive example of your independence, but also sad because of the amount of time you must have spent there. I could hear you mention an appointment at plastics, with the same surgeon that is helping Marshall. I hope this isn’t condescending, but I’m so proud of you. Your friends and family are lucky to know you! And honestly, if the rest of the dental waiting room was any indication, a lot of people likely notice how wonderful you are on a daily basis.
For the parents in the Apert community, I know it changes you too. The shock of finding out your baby has Apert syndrome has faded, but it has never worn off for me. It’s always in the background, and has fundamentally changed every single thing I do and think. This could very well be a by-product of an unusual brain damaged by years of no-helmet bike-riding as a child, but I can’t stop thinking about it.
I love going for walks with Marshall, and truly, negative interactions are so rare, but as soon as we leave the house, I put on my mental armour and harden my stare whenever we pass people, especially kids. Kids! It’s true – I furrow my brow from afar when new kids meet Marshall for the same time. I’m ready to shoot lasers from my narrowed eyes, just in case. And you know what? I know it works sometimes, like the time a few weeks ago when a group of teenagers had just started to laugh at him when they saw me sitting about 20 metres away, clearing glaring at them. They shut up instantly. When they started to talk quietly, I stood up, and they immediately backed off.
Is any of this healthy? Of course not. Only a lunatic would think this is going to be good for Marshall’s social interactions, but I cannot. My skin is thicker, and if it wasn’t for Bridget’s sanity and optimism, we’d be in trouble.
My singular purpose in life has become raising my kids and helping Marshall prove that Apert syndrome is nothing more than a bump in the road. It has to be like that, even if it can’t be like that, because it has to be. It just does.
It takes a lot more to feel emotions now than it did before. A routine bad day at work or a rough night of sleep feels relatively like a joke compared to anything Marsh has come through. Happiness is seeing my kids hug and hearing Marsh learn a new word or two. It would be nice to broaden my sphere a little closer to the way it was before, but maybe you can’t? Maybe that’s just what happens when your child needs a lot more care. There is a necessary tightening and focusing of your concerns and how you spend your time, as a friend and parent of a child with special needs put it.
On the other hand, I’m sure many parents don’t feel the same way I do, and that’s great. I wish I could do it! And maybe I will. One day, I hope Marshy reads this and says to me, “Dad, why did you waste so much time worrying? You could have been playing board games instead of stressing out!” It was all worth it, will be my response.
Being a big brother is hard. You have to share the attention of your parents. All of a sudden, there’s a cute little baby that everyone wants to hold and see, and you don’t have everyone fussing over you like they used to when you were younger. Quinn got all of this and more when Marshall joined us.
I struggled over the past few days about whether or not to write this. I’m addicted to the therapeutic feeling of getting things off my chest and into the blog, but I also don’t want to write anything that will upset Quinn one day when he reads this. I do think he ultimately came through it amazingly well, and I’m so proud of my big boy.
But first, back to the beginning of the story.
“I think I need to poo.” (Hey, I’m giving you context. And besides, if it was simply a number one, I would have just found him a bush in the alleyway.)
“Uhhh…we’re halfway home. We’d better stop into the school.” Panic enters his eyes. “What’s wrong? We can still get in. I’m sure the after school daycare goes in and out.”
“Nevermind. I don’t need to go anymore.” I wondered if he was embarrassed of me, mostly because, if I remember correctly, we were being really silly on the walk home. He answered that he wasn’t, but that he was embarrassed of Marshy.
I stopped walking and took a deep, deep breath. Here we go.
We’ve had a few experiences where Quinn has heard his friends and schoolmates make comments about his brother looking different or funny. I see it in everything he does when his brother is around him in the school area. On the playground, he will stop moving, crouched on top of the structures, and watch silently when other kids come up to Marshall. Often, the interactions are friendly and just fine, but he’s waiting for the inevitable. It might not happen for a month, but now that he has experienced it, he knows it will happen again.
It turned out he wasn’t quite embarrassed in the way adults would use the word. It’s partly (maybe mostly?) about feeling bad for Marshall rather than about Marshall. Quinn doesn’t want Marshall to feel bad about looking different, “even though I don’t think he looks funny at all”, he added.
I crouched down and pulled him into my arms. On the street, especially near his school, Quinn would normally not have the patience to endure one of my ridiculously emotional hugs (Bridget says she has never met someone who cries as much as I do, but I’d like to suggest that Kathie Lee Gifford cried a lot when she was on Live! With Regis and Kathie Lee, and Richard Simmons cried tears of joy every time he was on with David Letterman. So, at best, I’m third.)
This time, Quinn put his head on my shoulder and left it there. I could feel the weight of the topic in the way he just dropped his head onto my body, like it was too much for him to carry. After ten minutes of talking about anything else (the vast amounts of fecal matter local dog-owners leave on our sidewalks, who’s more powerful – Spider-man or Iron Man, whether or not his BFFs will be ready to play outside when we reach our house, etc.), I asked if he wanted to talk again. He didn’t say no.
“You know, he’s going to be at school with you in two years.” Panic, again. No, no, no comes the pleading from him.
“Who is going to stand up for him? He can’t make a fist with his fingers!” Ah, I know what he means all too well.
“He’s going to stand up for himself. He’ll be able to by then. He’ll know the words to say,” I respond, anticipating his next worry. “AND, he’ll have you at school, in grade 3!” He suggests a few neighbours who will be there too, all of whom will undoubtedly by incredible friends and allies. I’m still hoping I find a way to teach there in a few years if I still feel it’s in everyone’s best interests.
We left it at that. Within five minutes, he was swinging from the impromptu zipline in our driveway (built by Bridget, some neighbours, and the kids on the block), painting his face blue, and laughing about who knows what. But I know he took it in, and I hope he feels a little bit better about Marshall’s future. I could be reading all of this into his actions and words because of my own anxiety, but I’m fairly certain Quinn has a deeper understanding of differences and what they mean than the average five year-old.
And yes, we made it home before he had to poo again. You didn’t think I was going to leave you with unanswered questions, did you?
In 1994/95, I was obsessed with a television miniseries called Vanishing Son. It probably doesn’t ring a bell. I was off at university, away from home for the first time. This was before the days of PVR (which I have still never used) and still long before YouTube introduced me to endless compilations of the best dunks EVAR! and soul-crushing unboxing video creators who are drawing salaries ten times higher than mine. You see, Vanishing Son had something I had never seen before.
It had an Asian in the lead role.
Actually, it had a lot of Asians in it. I couldn’t believe the show wasn’t more popular! Russell Wong – okay, he clearly had one non-Asian parent, but close enough – had the good looks and moves and he was obviously going to revolutionize Hollywood. It had countless Asian actors in small roles. Who cares if they were still doing martial arts? It was better than having the ignominy of seeing Mickey Rooney as Mr Yunioshi in Breakfast at Tiffany’s or what I call the “mix-casting” of Chinese, Vietnamese, Korean, Japanese, and every other “Oriental”. They all look the same. So what if the Vietnamese guy can’t speak Cantonese? Just teach him the basics, right?
And to top it off, Vanishing Son starred Haing Somnang Ngor, only the only Asian actor to ever win an Academy Award for Best Supporting Actor, which he managed with 1984’s The Killing Fields.
I begged my mom to scan the Toronto Star’s tv guide which came with one of the weekend editions for the my new favourite show. She would then dutifully set the VCR (the WHAT?) and on my once-a-month visit home, I would revel in the show’s glory, sure in the fact that finally – finally! – Hollywood would get Asian casting right. No more pretend Asians. No more the-wrong-Asians.
Clearly, I was wrong. Casting directors still cast white actors in roles where the source material called for a person of colour. Ableism is still rampant. And somehow, Russell Wong never became the next Tom Cruise.
I love the book Wonder. It made me cry buckets of tears. I read it to my third- and fourth-grade students last year, and some of them cried – and this was before they knew how personal a connection I had to Auggie, the boy with Treacher Collins syndrome (which also causes a craniofacial difference, as does my little Marshy’s Apert syndrome). A movie adaptation has been made, and there is no doubt it’s going to be a hit. Julia Roberts! Owen Wilson! Mandy Patinkin! No, really, I love these actors. I’m going to see the movie. I’ll probably cry. Oh, actually, I know I’ll cry. I have no doubt the movie will be well done, the acting will be impeccable, and the soaring soundtrack will have tears rolling down my face as they roll down Owen Wilson distinctive nose onscreen at the same time.
I’m so angry at myself for thinking about this, but, oh, Auggie. The boy who plays Auggie is already a seasoned actor, and no doubt hits a home run with this role. To play Auggie, I assume he had prosthetics and a ton of makeup applied each day, which must have been difficult. The sarcastic side of me thinks it was probably not as difficult as actually having a craniofacial difference.
Treacher Collins is rare, but I wonder if there were any English speaking boys in the world who could have played Auggie. Somewhere, someone reading this wants to punch me in my left-wing Social Justice Warrior face and say I’m being too politically correct, but I can’t help wondering what could have been. I have no doubt the search would have been hard. Would possible hearing loss and a cleft palate make it even more difficult to find a prospective actor? I don’t know the answers to these questions I have.
But surely, no matter how gifted the actor, no portrayal could be as genuine as that coming from someone actually living the life. I get that it’s cinema, and you have to take into account the matter of entertainment, which too often is on the opposite end of the spectrum from authenticity. Still, wouldn’t we rather have gay actors in gay roles, black actors in black roles, and kids with facial differences playing kids with facial differences?
For all I know, the movie will be so good, I will forget these misgivings. I look forwarded to seeing the blockbuster version of Marshall’s potential future, and not just because I think being Owen Wilson would be really cool.
(Too long, didn’t read? It’s okay. My old friend Ramzi is running to raise money for his local Ottawa children’s hospital. Please help him out. It’s for a good cause.)
It’s funny how life works. I’m not the easiest person to get to know, I’m fairly moody, and don’t maintain relationships particularly well (Bridget – this should be my dating bio if we ever go our separate ways. Imagine the deluge of responses!). Generally, when one phase of my life ends and another begins, I just move on. It’s not that I don’t value friendships so much as I just don’t have the energy, time, or inclination to nurture them.
When I was in ninth grade, I tried out for the basketball team. I didn’t make the team. Frankly, I was stunned. The team was terrible. Our coach (I guess he wasn’t technically my coach for more than the three tryouts) was a former Olympic basketball player. Surely he could see my skill through the big glasses, floppy, unkempt hair, and short shorts that I sported each morning. I felt like I was walking into a room full of the castoffs from the Bad News Bears.
Since my dreams of becoming a pro basketball player disintegrated before my very eyes, my mornings would be free all fall and winter.***
“Come join the swim team,” suggested Ramzi. I looked at him like he was a lunatic. The swim team? Put on some unflattering spandex Speedos and swim around an unheated pool until I threw up? Yeah, sure. Why not?
Before the first swim meet I went to, where I stubbornly wore long surfer shorts and was thrown into a 400m freestyle race, Ramzi and I were standing around the foyer of our high school with another classmate, waiting for everyone else to get there so we could leave for our meet. Next to us stood a locker designated as the school Lost and Found area. Out of boredom and mischief, we rooted through the locker and pulled out a ladle – a fairly nondescript soup ladle. The ladle became our team symbol. The captain would have us kneel by the pool, and in a Monty Python-esque show of ridiculousness, he’d bless us with a ladleful of water before each meet. We would also scream out “L-L-L-L-L-L-L-LADLE! LADLE!” every few minutes during swim meets just to be equal parts obnoxious and amusing. It probably wasn’t so equal.
Eventually, we graduated from high school. By then, I was in my full surly mode, no idea what to do with my life, and I was probably pretty hard to be around. Ramzi moved away to go to school, I moved around to a few different schools, and we didn’t see each other for almost twenty years.
Until Marshall was born.
By 2015, I had been on and off Facebook for a while. Every few years, I’d delete my profile to hide from former students and old acquaintances. At some point, I came across a post of a friend where Ramzi left a comment. Recognizing the name and feeling nostalgic, I clicked through his profile info, happy to see a few photos of my old friend.
Around the same time, Marshall was born, and I went dark online for a few months while I avoided anyone I knew. I couldn’t figure out how to tell the world what was going on with our little boy. Finally, about two months after he was born, I started this blog because I was tired of hiding and delaying the inevitable. We were finally out of the hospital and for the first time since Februray 21, 2015, I could take a breath and assess the situation calmly.
Ramzi wrote to me soon afterwards. I remember sitting on my bed when his message popped up. As I write this, I’m getting emotional thinking about how much it meant to me. He shared his family’s own ordeals in neonatal intensive care with me and offered me encouragement, an attentive ear, and kindness. Twice, he met up with me when he was in town visiting family. Our situations were medically different, but there were so many similarities in our experiences that it was incredibly reassuring to hear how well things were turning out for his family. Maybe the light at the end of my tunnel was just that, and not an oncoming train.
In a few weeks, Ramzi is taking part in a 10km race to raise money for a children’s hospital in Ottawa. Money raised will go to a hospital that has helped Ramzi’s family and countless others. If you have been touched by this bit of writing, you’ve taken your child to a hospital, you have friends or relatives who access health care services frequently, or you just want to support my old friend, then please consider helping him reach his modest fundraising goal by clicking here and sending him whatever you can. The health care system in Canada is phenomenal. I have no doubt Ramzi and I would both be a million dollars in debt by now if we didn’t have access to our medical resources. Take a walk through any pediatric hospital, though, and you can see how much more can and needs to be done.
Thanks for your help.
***For anyone interested in even more tangentially-related facts that actually have little to do with Marshall and Apert syndrome, I ended up quitting swimming in grade 12 and instead played on what can only be described as a basketball kibbutz. Everyone made the team, our tallest player and centre stood barely six feet tall, we went 0-11, frequently lost by 50 or more points, and once scored a total of 8 points, a game in which our four leading scorers each had one bucket. I did not score a single point all year. I’m not sure why. This is made all more farcical considering I had by that point become a decent swimmer. If only I had paid more attention to either Mark Spitz or other Olympic swimmers who achieved fame, or perhaps parlayed our notoriety as the worst team in Toronto high school history by pitching the sports biopic idea to movie studios.
You want more details, you say? At least three of the members of our boys’ swim team became doctors. Ramzi is basically a genius who lived in Hawaii for a while and maintained his teenaged physique and athletic prowess. Another classmate became a lawyer. I, on the other hand, am sure that of all of the boys – MEN! – on that team, I have by far the largest board game collection in my basement.
Finally, at that first swim meet, the coach gave me the goal of finishing my 400m race in under 7:00 minutes. My time? 7:01. Eventually, I’d get down to under 5:00, but only after I ditched the surfer shorts and put in a few years of work.