I’ve been posting less and less. In many ways, this is a good thing, because my posts have generally been triggered by some real-world occurrence involving Marshall’s health or well-being. In this case, no news is good news.
Marshall has settled into his daily routine at pre-school. Because of our work schedules, Bridget drops him off each day and I hear stories about how much fun it is to take him to school. And so, one day a few weeks ago when I was not at work, I took Marshall to school. The moment we walked in, you’d think Freddie Mercury and Elvis Presley had come back from the dead to record a new version of “Don’t Go Breaking My Heart”. Volunteers and staff at the school burst into a cheer, and Marshall proceeded to do a circuit of the room, high-fiving anyone interested. My cold, cynical heart just about sputtered to life. Upstairs, he hung his things up, changed his shoes with my help, handed his teacher his communication book, and then said hi to his friends. I don’t know how Bridget drops him off without crying every day.
It felt very comforting being at the pre-school. Maybe it’s because I know that of all places – even more so than the hospital – there is no judgment in that building. No staring. No wondering. Nearly all of the children attending the program are growing up with some kind of challenge. I still look down when I walk into the building, but at least there’s no tightness in my chest.
Marshall has made it to the end of 2017 healthier than he was when we rang in the new year. He’s growing, he’s thriving – all good things. I’ve spent the last 2.5+ years worrying and worrying about what has happened and what hasn’t happened yet and what may or may not happen. The stories my brain creates in an instant could pack movie theatres for years (starring Ryan Gosling as me, naturally). Perhaps it’s time in 2018 to let go of some of that anxiety that has become an unfortunately all-too-comfortable companion. I can’t spend the rest of his childhood with my guard up anytime another child comes within two hundred metres of us (I can probably get that down to a 50 metre radius). I have to stop making comparisons when we are in the company of other families, wondering what other parents are thinking or if they are comparing or what if this or that or this. And I have to stop gritting my teeth when I hear another parent talk about how hard a night they had with their newborn because of course they have a right to complain. Being Marshall’s dad doesn’t mean that knowing parenting hardship belongs solely to me.
As I’m typing this sentence, I can hear Marshall upstairs with his mother, learning how to access Netflix through the Playstation 4. “SOMETHING’S WRONG WITH THE PS!” Bridget calls down to me (I can’t believe she calls it “the PS”). I can hear Marshall tugging at her sleeve and trying to get her to pass him the controller while I call out instructions to get her where she wants to go in the menu. He’s probably wondering why she doesn’t just pass him the controller and get out of the way.
Just pass him the controller and get out of the way.
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?