I was recently asked to write about my experiences as a father to Quinn and Marshall by AboutFace, a Canadian organization dedicated to improving the lives of people with facial differences, and Canadian Living.
It’s hard to believe it has been one year. In many ways, it was the longest year of our lives, but because of the learning we’ve had to do at lightspeed, the year has been a blur as well. On that cold, rainy/snowy February day last year, I carried my little newborn boy into the back of an ambulance to be whisked away to Toronto East General. Wrapped in several blankets, little Marshall Han Ku lay in my arms as the paramedics gave him oxygen through a mask, checked his vitals, and congratulated me on our beautiful addition to our family. I sat in stunned silence, more worried and sad than I had ever been. In one morning, our lives were turned upside down. That night, our neighbour Neil knocked on our door, and without saying anything he gave me a hug and told me everything would be alright. I’m not sure I believed him at the time.
A full year later, upside down has meant a lot more appreciation for the fragility of life, and I can’t speak for Bridget, Quinn, and the cats, but it has also meant a great deal of joy and love. Despite the nights of crying (that still happen sometimes), the days and nights at the hospital, and the constant worry for the future, there has been nothing more wonderful than to lie in bed on weekend mornings with my two boys snuggling with me and laughing. I have had the privilege of watching Quinn be an amazing and tender big brother, as well as Marshall’s biggest fan. Marshall looks at him with his big eyes full of nothing but love and happiness.
I’ve watched Bridget go from superstar mother to mother of the year as she juggles myriad appointment-making, all with her chin up and hope in her heart. She has been a rock for our family.
We’ve had family and friends rally behind Marshall and give us more love and support than I thought possible. We’ve wanted for nothing, especially not encouragement.
And most importantly, Marshall is doing well, perhaps even thriving. He laughs, he smiles, he has started babbling (of course, “Daddy” was his first word!!!), he plays with us, and he has taught me what true toughness means. He has endured more in his one year of life than I have gone through in thirty-nine years. He is, in a word, my hero. I rankle at the thought still that he will have to carry the burden of teaching compassion and empathy, but who better to do so than my little hero? When I look into his sparkling eyes, I see a boy that doesn’t yet know or care that he is different, but instead looks at me with the one thing any father would wish for – love.
Because that’s the point of family, isn’t it? There is love in this household – enough, I think, to carry us through the hard times and the surgery he had and the surgeries to come, as well as anything that might be coming in the future. I have to think this way. To look at it any other way would make it too hard to go on.
That first night, Neil was the first of many to tell me everything would be okay, and gradually, I came to embrace that thought. It HAS to be okay, because it just has to be. It will be. Each day, it gets a little bit easier and more comfortable to think that, as Marshall has developed and grown. Things have gone much better than I imagined it would since that first scary, unknown day.
Thank you to all of our neighbours, who have done nothing but embrace Marshall each day with the same love they have shown Quinn. Thank you to all of our friends, near and far, who have made sure we our lives have been as stress-free as possible. Thank you our families for rushing to our aid at the drop of our hat, for letting us cry on your shoulders, and for loving Marshall and the rest of our family with tenderness and kindness.
We have not been alone in this difficult journey. There have been a lot of other families raising children with Apert syndrome that Facebook and the internet has allowed us to communicate with and share our fears and questions. Each day, I watch their struggles and triumphs too. Sometimes, my heart breaks, but it also bursts with pride as I watch young men and women succeed and thrive around the world, all of them overcoming much more than most of us have had to face.
All of those children and adults are my heroes. It is a community I did not know about one year ago, but now consider myself lucky to be part of it.
Finally, thanks for reading this blog and coming along for the ride. One day, I hope Marshall will be able to tell you his own thoughts. Until then, it’s my pleasure to speak on behalf of him.
It’s 7:20 on a Friday morning as I type this. Marshall and I spent the night at the hospital doing a sleep study. The hospital wanted to try some sort of high-flow oxygen machine to see if it would alleviate some of his sleep apnea between now and whenever he gets his surgery to have stents put in (at the moment, in January). I don’t know how Marshall feels as he can’t talk yet, but I feel like I’ve been hit with a sledgehammer in the head. I don’t think the therapy worked, but we’ll have to wait for the results. He sure as hell didn’t sleep better with all of those wires attached to him, and it must have been tough for him to have the continuous stream of air forced into his nose. I managed to get a bit of sleep, but I also feel like I could sleep for another twelve hours straight. Thank goodness for coffee, right?
After Marshall was born, a lot of people told me that Marshall would teach all the people who are in his life so much. That made me really, really angry. Why should MY CHILD be the one who has to carry the burden of teaching people lessons about life? What kind of responsibility is that to give my child? I still feel like that. I HATE the thought that sure, some people are going to become more empathetic or caring because of their interactions with Marshall, while Marshall is going to have to put up with people staring and pointing at him because he’s different. Bridget has already had a little girl come up to her at a playground where Quinn was playing and ask why Marshall’s head looked different. She was asking innocently and without any hint of malice, but when I heard the story, I started crying anyway. I should get a job in soap operas.
The truth, though, is that this experience of raising Marshall and learning about Apert syndrome has taught me a lot about myself and the world.
I’ve learned to be a better father to Quinn. I think Marshall’s rocky start to life has made me appreciate Quinn’s good fortune and health. Oh, don’t get me wrong – it’s not all roses between me and Quinn (see below!), but in those times when I get to devote all of my energy and attention to Quinn, we’ve had some amazingly tender moments.While I’m on this point, I want to thank the woman on the College streetcar on Wednesday night at 6:30 who said something to be quickly before getting off at her stop. Quinn and I were talking about his day at school, what it meant to buy a birthday present for someone, and how it didn’t mean we had to get things when it comes to our birthdays. I was just following what I really believe and having a great talk with Quinn. The stranger, who I guess was sitting behind us, leaned over and said, “Wow, you are an amazing dad.” Whoever you are, thank you for your compliment. It was a surprise and touched me so, so deeply. I have been thinking about your words and holding on to them during the tough moments for the last few days, and will continue to use them as encouragement.
Quinn is going to be an amazing and protective big brother. Hey, you never know how sibling are going to be. I know plenty of people who don’t talk to their brothers or sisters. It’s still early days, but Quinn already knows Marshall is different from other kids. He loves holding his little mitten hands. He starts and ends each day with a loving hug and kiss for Marshall. He gets upset when he thinks about Marshall going to the hospital, and wants to spend time with him.
I cannot look ahead to the future right now – tomorrow is too far away. Taking it one day at a time is such a cliche, but that’s all I can handle at the present. Every day for me has turned into a battle to make it through the day and to bed. I definitely don’t spend enough time with Quinn and Bridget because I’m so tired all the time. I was never a particularly patient person, and being around me now is like walking on eggshells for the rest of the family. Thank goodness for grandparents who have been so invaluable in helping with cleaning, cooking, and childcare whenever everything gets too crazy.
There has to be hope. Even with the struggle mentally to make it through each day and night, there has to be some hope for the future. Out of the hospital for a long stretch between June and November, Marshall is slowly catching up in his development. Nothing feels better than coming home after a tiring day to find him in his Jolly Jumper near the front door. He hears me and jumps to turn himself around. And then there’s the smile and twinkle in his eyes when he recognizes me.
The school system is moving in the wrong direction. Class sizes getting bigger, special education programs folding, and labour negotiations taking forever every few years in Ontario. As a society, whether or not you have kids, you have a vested interest in children getting the best education possible. This is not the area to save money. These are the future leaders and citizens of our world. I fear for Marshall’s entry into the school system if he needs extra support. If you are a parent of a child with special needs, do not let the school system push you around. Speak up and get your son or daughter the education he or she deserves.
Just as I’m about to post this, I’ve received an email from Bridget that the results from last night’s study are in: it didn’t work, and his sleep apnea is worse than it was a few months ago. Hopefully, the surgery date is pushed up from January and we get Marshy more of what we all need – air.
I wrote this three days ago and have hesitated to publish it because I know I come off sounding full of regrets and wishing that things were different – AGAIN. I’m going to publish it anyway because, I suppose, I need to own those feelings and let myself know that maybe it’s ok for me to feel that way.
In addition, it’s Friday night right now and we’re back in the hospital for the first time since early-June. Marshall has some sort of virus and has enough trouble breathing that he can’t stay asleep for more than a few minutes at a time. So, that means he’s going to spend some time back at Sick Kids to be monitored and to make sure it’s nothing more than a cold. Bridget’s there tonight, and then I take over tomorrow morning.
I met Pat when I was six years-old and a new student at the Catholic elementary school I attended in Scarborough, Ontario. I didn’t know it at the time, but that was the start of a lifelong friendship. We’ve done a lot of stupid things together. If you’re bored, I wrote about one of those adventures in a newspaper a number of years ago.
I still remember being a fairly new student at the school, entering a class where many of the kids knew each other from their Kindergarten class the year before, and being nervous about meeting new people. Pat handed me a birthday party invitation some time halfway through the year – my first birthday party invite! I can still remember the party, the house, his black dog, and the fun we had that day.
I changed schools for my grade 7 year, but we still lived in the same neighbourhood, so there was still a lot of time spent together playing basketball or hanging out. That summer, to mark the end of an era at the same school, Pat, our friend Jerry, and I spent an entire night watching really bad movies and drinking our way through FORTY-EIGHT cans of orange and grape Crush. Unsurprisingly, Jerry spent the next morning vomiting streams of purple liquid.
Before you knew it, we were adults and living in different cities. I moved back to Toronto after a few years away, but we were never to live in the same neighbourhood again. Pat now lives in the west end of the city, and I live in the east. Toronto’s a big city, and with busy work lives and busy home lives, our get-togethers have grown progressively less frequent.
I last saw Pat on my birthday in September of last year. Bridget had organized a surprise for me at a Mystery Room, where I was met by a group of good friends. Afterwards, a few of us went out for a dinner of Korean BBQ. Bridget was four months pregnant then, and we were blissfully unaware of how different our lives were about to become. We parted that night with Pat and Christine the same way we always parted – with promises to get together again soon.
Marshall’s birth and the accompanying surprises have been like an episode of X-Files where time has been lost and all memory erased. It seems unbelievable that I have not seen Pat since that day over one year ago.
This past weekend, I wanted to change that, so I packed Marshy into the car and we made the quick drive out to the west end of the city for a visit. It’s been a while since I’ve had to introduce Marshall to someone who hasn’t seen him yet. I still get anxious when I’m out with him in the stroller, but I’m starting to have times when I forget that people might notice something’s different and stare. I had that briefly on Saturday, but soon it felt like old times again. Things were clearly different. I felt about ten years older than the last time I had sat in their living room. I was happy to see them, but I definitely felt a sadness as I thought of how different my life is now compared to what I thought it would be when we were teenagers.
I love Marshall with all of my heart. I wouldn’t change a thing now, mostly because wishing for that would be futile. That much needs to be made clear first of all, but when you’re young, and you’re in class with your third grade teacher, no one tells you how hard life might be. You believe that you can be anything and anyone you want to be – Prime Minister, an astronaut, a lawyer, a doctor, a professional basketball player (I’m still hopeful for that), a teacher – but no one tells you of the times when you’ll be sleepless, or desperate for a medical miracle, or you’ll wonder if there’s a light at the end of the tunnel.
I tell my students what my teachers told me thirty years ago – you really can be anything you want to be. I tell them that because everyone needs to dream and to have hope. Life would be too unbearable and crushingly daunting without dreams. In many ways, I do believe that they can be anything and anyone they want to be. I cling to that hope for them, much like I hoped for wild futures for myself when I was their age. But really, all I would really hope for if I could go back in time would be for an easy life of happiness.
I’m happy I took Marshall to see Pat. Marshall is starting to be a little fussy when strangers hold him, but when Pat sat him on his lap, Marshall was calm, looking up at this new person inquisitively. I left the visit feeling happier than when I arrived. It felt like old times, sort of, but with some complications and challenges thrown in. I think someone like Pat would have handled the changes we’ve had at home differently. He’s much more laid back, and I doubt he would have gone to the dark places I’ve been to mentally since Marshall’s birth. It was pretty neat to see Marshy in his arms. I felt like I was introducing Marshall to two people who will be in his life in the future, two more safe people he will be able to be himself around in case life ever gets too crazy, two people I’m sure he’ll be comfortable being around as he grows older.
Marshall’s still a few years away from school. When he finally takes his first steps into grade one, I hope he meets his version of Pat like I did thirty-three years ago.
I can still vividly remember Nikolai Borschevsky scoring the most important Toronto Maple Leafs goal of my lifetime. I was still optimistic at the age of seventeen that I would soon see my Leafs win the Stanley Cup. He scored the series-winner against the favoured Detroit Red Wings, and the city went wild. Disregard the fact that they didn’t end up winning the Cup that year or any year since; for at least one night, the city believed anything was possible.
In the years since, we’ve learned to adjust our expectations. The team has very occasionally been decent, but it has mostly been filled with disgust and disappointment. In mid-90s, after Borschevsky scored his goal, hopes ran high each year. Steadily, expectations have been eroded so much that some seasons, I’m surprised they can find twenty guys that can skate. I’ve learned expect little, and hope to be surprised.
This is the opposite of how I want to be with Marshall. I have been telling myself that he is going to surprise people, he’s going to surpass all expectations. To be clear, I don’t know yet what those expectations are, and doctors have cautioned us that it’s still too early to tell what’s going to take longer to develop or what’s going to be a challenge in the coming years. Regardless, I have refused to treat him differently than I treated Quinn. I take him out in the stroller every day for long walks and we sit on benches and have a bottle of milk in the warm, sunny weather. We’ve been reading books together each day, and I see his eyes darting from page to page, animal to animal, colour to colour. We roll around on the floor and cuddle, we sing songs, and I tell him how much I love him.
Yet through it all, I still find it so, so hard to ignore the voice in the back of my head that cautions me to be guarded in my optimism. Personally, I’ve spent my life expecting little of myself and just coasting. I’m tired of being pessimistic all the damn time. I want to pour my optimism into Marshall’s life and dream of all the incredible things he’s going to do, just like I have hopes and dreams for Quinn.
So, it’s been a good, if tiring, few weeks since the school year ended. I’ve been home with the boys, taking Quinn to his half-day summer camp in the mornings and picking him up at noon, spending the intervening couple of hours strolling around the neighbourhood with Marshall, and then keeping them both happy and fed each afternoon. I had almost stopped thinking about the nightmarish start to Marshall’s life in February.
Today, we took Marshy to Sick Kids for his first appointment with his neurosurgeon. Eventually – likely in the next half year or so – he will have his first cranial surgery. Today was a chance for his neurosurgeon to meet him and do a quick check on his growth and progress. (For any doctors reading this, I want to implore you to remember that parents that are seeing you are probably incredibly anxious and worried. Please, please try and throw something positive into the conversation. Anything. Tell me he has a cute chin, or that his fat cheeks are delightful.) Anyway, the doctor confirmed a worry we have had (I’ve actually been avoiding thinking about it or hoping it’s not true) about Marshall’s apparently lack of focus on our faces. So many things could be causing this, and now we’ve got another ultrasound lined up, and an MRI which will require sedation. His condition has so many factors that it could be a lot of things, and I suppose it could be nothing. Still, the appointment crushed me.
Tonight I gave my little Marshy his bath. I always get in the tub with him, as I did with his brother, and he has slowly begun to enjoy (I think) his baths. I held him to me and cried tonight, sorry that I couldn’t protect him from all of his hardships, sorry that he would have to add another few procedures to his growing list of hospital visits. He leaned his head against mine calmly, and I found comfort in his pillowy cheek as it rubbed up against my wet face. I still weep and scream about the unfairness of the situation; why him? why anyone? But I know it does no good.
There are a couple of groups on Facebook – closed to the public for good reason lest the trolls begin commenting on the photographs – open to individuals with Apert Syndrome and families who are raising an Apert child. I’m amazed at the number of members in the groups; in the larger one there are over 1500 members, quite a number given the rarity of the syndrome. I’ve mentioned before that I find it hard to read updates posted to the group. I’m still too much of a coward to read the posts without periodically crying or despairing, even though many of the messages are beautiful.
There are people with Apert syndrome who frequently post in the group, and one in particular reached out recently to Bridget after reading about our experiences. Her message was one of success, triumph, and independence. She has achieved more than I have in far fewer years, and that gives me something to hold on to. I am so grateful for her unsolicited sharing of her understandably private life.
Perhaps my expectations need to change a little given what Marshall is facing. It will probably take him longer to hit milestones such as crawling and sitting up, although I still don’t want to believe it. I need to find a balance between my hopes and reality. I know it’s not my life that he’s living, and my job is to be there for him and to show him love and support. It’s just so hard to watch it all unfold feeling so powerless.
Marshy, I’m not giving up on you, and I’m sorry if you ever see me looking sad. Sometimes, I just need to let out all of my fears so that I can be strong for you. I believe in you – far more than I believe in the Leafs.
I saw an old friend on Saturday. It was a beautiful, sunny day, and I was walking down a street busy with families enjoying the nice weather. She was with her young child, and in front of me I pushed Marshall in a stroller. I wanted to stop and say, “This is my little Marshy Marsh. Come and meet him!”
Instead, I stared straight ahead and hurried past her, hoping she wouldn’t see me.
Marshall is about ten weeks old now. The grind of nights at the hospital and days at work, over and over again, was too much, so I’ve taken a few weeks off work. Despite my grumbling the other night (maybe it was a lot louder than grumbling; hey, I was worn out), I do love holding him and doing the nighttime feeds. I love to hold his little mitten hands in mine, and to aggressively kiss his fat cheeks. It’s disgusting, but I like wiping clean the fat folds in his arms and neck, and gently picking at his cradle cap. I look at him and think he is so cute. He really is. He’s a fat little muffin right now.
So why did I ignore my friend? I’m not ashamed of Marshall. I’m not embarrassed. If I’m going to be honest with myself, it’s that I’m exhausted by the constant anxiety that I feel when I think I’m going to have to answer questions. I imagine stares from passersby, when all they probably see are his cute little feet sticking out from under the stroller’s cover. If someone meets him for the first time, do I start with, “This is Marshall! He has Apert syndrome. That’s why he looks a little different”? The last thing I want to do is allow the syndrome to define who he is. I also feel like I should just get it out of the way right from the get go.
I know this is all my issue right now. He’s not even three months old, so he doesn’t notice any of this going on. All he wants to do is fill his diaper every hour.
Later that same afternoon, on the way back home, we stopped at one of our favourite neighbourhood destinations, a little independent toy store. We love this place, not only because of the fun stuff they sell, but because I truly feel safe around the two proprietors. They are good people with good hearts. It was a lucky coincidence that I stopped in with Quinn the first week we moved into the area, and we haven’t stopped dropping in every few days since. That day, I met another regular for the first time. He was there with his young daughter, who appeared to be about Quinn’s age. After fifteen minutes of chatting, they were ready to leave, so he came over to say bye to Marshall. I immediately felt the familiar tightening in my chest, but I forced myself to let it go. I had already passed up one chance to let someone see how cute Marshall is, and I wasn’t going to let a second chance that day go by. He crouched down in front of the stroller, and he and his daughter felt Marshall’s little feet and hands. It was unusually tender, and although normally I would be put off by a stranger touching my baby, there was something different about this encounter, so I let it continue. After a minute, they stood up, we shook hands, promising to see each other again here, and they walked out of the store.
Only afterwards did I find out that his little girl is nearly blind, and touching things is how she sees them. I had no idea, and her father certainly gave no indication that she was in any way different than any other child I might pass on the street. The entire time in the store, there was no sign of anxiety, and his daughter was confident and self-assured. This man is my role model now. I want to get to the point where I am not scared to be around other people again. I’m going to take Marshall outside right now for a walk, and if I see my friend again, I will stop this time and introduce my little Marshmallow.
In 1907, Mary Mallon – better known as Typhoid Mary – was quarantined for the first time, destined to be shunned for the rest of her life for being a carrier of disease. She tried to reintegrate herself into society, but ended up getting more people sick, and finally lived out the last twenty-three years of her life in confinement, on a small island in New York. This story always fascinated me because I find her life to be so romantic and idyllic. Oh, sure, she infected fifty-one people, of whom three died, but she was basically told she had to be alone and couldn’t be around people. I often thought about being a modern day Typhoid Mary, surrounded by shelves of books and stacks of newspapers, maybe a computer with access to Netflix by my bedside. Meals on trays would be brought to me, slid under a cut-out in the door. I once saw a video of a man who spent months in quarantine while recovering from tuberculosis, and I morbidly joked about finding a way to catch it myself.
I feel like I’m in confinement myself today. Over March Break, Quinn had the flu and was inconsolable, so I spent a week’s worth of nights in his bed, helping him blow his nose, singing to him, and soothing him back to sleep while he suffered from fevers and aches. I had the good fortune of having him vomit on me one night. Soon after that, Bridget came down with a similar ailment, and then Marshall had it passed on to him, which landed him in the hospital because he could not get enough oxygen into his little body. Somehow, I felt amazing each day despite sleeping in his hospital room for nine nights straight.
Well, that has all come to an end. It’s as if my body gave out as soon as the hospital visit ended. I’ve been achy and irritable all Easter weekend – more so than usual. After making it through a day of work yesterday, I’m spending today in bed, drinking copious amounts of water, taking Advil and Tylenol, and futilely calling to my two cats, hoping one of those ingrate bastards will keep my company while I feel sorry for my sick self. So far, no luck. I can’t even be around my family, even though Marshall has an important check-up with Dr. Forrest – his plastic surgeon – this morning at the hospital. If he were to get sick again, that would probably mean another stay at the hospital with the oxygen hood over his head and a feeding tube down his throat.
And yet, soon – probably by tonight – I’ll be feeling better and back on my feet. My exile is temporary. I cannot stop myself from thinking about how Marshall will be viewed by his peers. Will he feel welcome?
When I was growing up in Scarborough, there were almost no visible minorities at my school, believe it or not. Now, there are East Asians everywhere in the city, but in the early 1980s, outside of Chinatown, and especially where I grew up, if you weren’t white, you were noticed. Names were called, things were said, and eyes were pulled back mockingly in the schoolyard. But that has changed, and even then, there were places I could go where I would not stand out.
Where is this safe place going to be for Marshall? He is certainly going to look different from his peers. I love to kiss his little face, and I love the way his jowls rest on my shoulder. As he grows, however, he is going to need many surgeries, and his physical appearance will stand out. As I type these words, I can feel the anger rising up inside me as I imagine what I went through thirty years ago, but magnified a thousand-fold. People will stare, people will whisper, and people will dismiss him without giving him a chance to show them what he has to offer.
You don’t need research to tell you that good-looking people tend to be more successful. There have been plenty of studies that have shown a strong correlation between physical attractiveness and hiring. How else to explain how I got my job? (I kid, I kid.)
Right now, all I want to do is protect my little boy and to shield him from the horrors of the world. I’m sorry, but it really is a rough world out there. I see it every day in the school yard, at the grocery store, on the streetcar. It’s rough for the average person; I can’t imagine what it’s like for someone with clear differences.
My heart aches when I think of the times Marshall is going to notice people pointing at him, or when children don’t want to play with him because he’s different. I’m trying so hard not to think far into the future or to be negative. Maybe it’s the flu, maybe it’s the fact I ate an entire blueberry pie (thanks, Joanne), but I’m having a hard time feeling positive this morning.
I know in my first post, I talked about Googling images of Apert syndrome. It’s horrible. The search results are deflating. I know that surgical procedures have evolved a lot, and I have the utmost faith in Marshall’s surgeons that they will not only give him the healthiest life possible, but the best chance of feeling good about himself.
For our part, I know that as a family, we will have to learn to balance protecting him from cruelty, as well as teaching him to be a strong young man who believes in himself. My favourite thing to do with him right now (when I’m not in ague-ridden exile) is to hold him against my shoulder. He rests his large head on my shoulder, pressing a fat jowl to my face. If he is only in a diaper, I can easily kiss the little fold of flesh on his upper arm. I want to keep him as a baby forever, so he never has to grow up and see what the world is really like. I want to hold him like this forever. If I can’t go back in time, I want to freeze the clocks so that it’s just him, his fat cheeks, and my kisses.