Going for a walk with Mom

Marshall turned three yesterday. Three! I can hardly believe it. I had actually forgotten his birthday was yesterday until I was reminded the day before. I always get confused about his birthday. I’ve answered with the wrong day at least two dozen times at the hospital when we check in. I almost always say the 26th, even though it’s really the 21st (Quinn was born on the 26th of another month, in another year; same planet, though).

My little guy is a full-fledged little boy, running around, causing trouble with his brother, curious as can be, and starting to talk to us. He feeds himself, he walks around with his backpack, eager to go to school and play with his friends. Marshy follows his big brother around, acting like a clown and making everyone laugh with his silly antics.

Playing a board game with me

He has come a long way, certainly. I can hardly believe what he has had to go through to get to where he is now; I can also hardly believe how much more there is to come, but that’s not for today. Bridget hit this point long ago, but I am just now starting to relax and not be in a constant state of worry. Besides the things I can’t control, what is there to worry about? We walked home after I picked him up yesterday afternoon, a slow, meandering walk (putting him in the stroller is like applying hot coals to his feet these days) with Quinn and me following behind while he tries to strike up a conversation with every person we pass.

At one point yesterday during the walk, I looked up to see Quinn laughing and running ahead, while Marshall called after him, wobbling along, trying to keep up in his clunky winter boots, and I felt happy. I was calm enough to recognize that.

Curious (or just trying to see what he can break)

It’s time, I think, for me to take a step away from writing this blog. My output has certainly diminished, partly because many of my early posts were written during long nights at the hospital while Marshy half-slept and machines beeped, and those types of emergency visits are extremely rare these days. Our visits and stays are scheduled now as his health has stabilized and we’ve learned more about what Marshall’s Apert syndrome means. The blog has provided me with an outlet for my stress and anxiety. The therapeutic value of sharing my fears and hoping that it will help another family in the future provided comfort during times of worry. Just as importantly, it allowed me to keep family and friends in the loop without having to recount difficult details multiple times. I may still drop in from time to time if major events happen, but people who know me are probably already shocked I stuck with an activity for three years.

Finally, Marshall is growing up, and I think it’s time to stop speaking for and about him soon, and allow his voice to narrate his life. I was the trailer hyping his movie, and now that the film is in theatres, all eyes should be on him.

So for now, thank you for reading and following my special family and all the heartache, joy, pain, and delight that comes with being a father to my little guys. Over the last few years, I have been stopped by people who tell me they read about Marshall online. I appreciate the emotional support, the kind words, the unending love and unconditional encouragement from everyone. It’s not that I’ve run out of things to say about Marshall, but rather there’s too much to say.

I love these guys. I love you, Quinn and Marshall.





Super (Mario) Bros.

Quinn at 3.5 years-old
I’ve been looking at this photo since it popped up in my FB Memories a few weeks ago. It’s just a photo of Bridget teaching Quinn how to play Super Mario Bros 3 on the train to Montreal just over 3 years ago. It was a nice train ride.
You can’t see it in the photo, but Bridget is very pregnant. She must be about 32 weeks pregnant if my math is correct. There is nothing sad about the photo itself, but it is very hard for me to look at it without breaking down. I don’t know exactly what I mean by this, but I guess it was a much simpler time before a lot of scary and unexpected things happened.
“Why do you think about that time when everything is okay now?” she asked me the other day. I really don’t know. It sends me rushing back to that day (week? month?) when precious Marshall was born, and for a brief time in our lives, I was scared absolutely shitless. I don’t know how else to put it except that way and with more expletives.
And in the spirit of honesty, I’m appalled that the photo elicits this reaction in me. I know the healthy and right thing to do is to look ahead and realize all the triumphs Marshall has achieved and see that things are much, much, much more okay than I expected on February 21, 2015. And then I think THAT sentiment is wrong. It’s all very confusing.
But maybe it isn’t? Social media has given us the chance to connect with other families in similar situations, to share knowledge and experiences, and to offer and receive emotional support when necessary. It’s wonderful. It has also served as a reminder of some scary times.
I want to look at the photo and fondly remember that last little trip before the latest phase of life, and yet because of the way I think of it, guilt about missing that simpler time ends up suffocating me.
One day, Marshall, you might read this. By this post, you’re probably thinking, “Man, my dad was a mess.” You’re not far off, though I want you to know that all the times you saw me worry or have a hard time with things, or all the weird posts where I was fretting and wringing my hands – despite all that, my life would be incomplete without you and Quinn. While I feel all these emotions when I look at the photo, I also remember that you and Quinn give me my best reason to get up every day, to go to work, to come home, and to go to sleep again – all to do it again the next day.
Mesmerized by a tortoise!

Another year


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.

Marshall at a birthday party

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.

I love his sweet little face

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.

Hanging out with grandpa

A Running List of Marshall’s Medical Teams

At the annual AboutFace awareness ride

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.

Hospital Services

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)

Bare-chested dancing for his grandparents

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.

A reminder of how much Marshy has grown

All In the Family


It’s been a while since the last post.  Sometimes, no news is good news, and in this case, that is exactly how it has been.  With his syndactyly release done, Marshall has no major surgeries scheduled in the near future.  His hands continue to go through the healing process, and while he screams and fights me when I massage his fingers to break down the scar tissue, he is slowly learning to use his hands.  It was pretty amazing to see what he was able to do with just his thumb and his four fused fingers, but now he is grabbing things, dumping toys on the floor, and just the other day held my hand while we went for a short stroll.

Yes, that’s right – he’s walking.  About two weeks ago, he finally took the plunge and let go of the walls and furniture and since then, he has been unstoppable.  He’s already quite steady on his feet, and of course he’s fearless (what’s a few falls when you’ve had three surgeries, right?), all of which means the cats are in trouble.  As soon as he sees Wallace or Indie, he makes a beeline for them, hoping to pet their soft coats and give them a sloppy kiss.  The cats, on the other hand, don’t seem to be quite ready yet for the saliva bath.

And as usual, Marshall continues to be just about the happiest kid I’ve ever met.  Laughing, smiling, and looking at us with those twinkling eyes – it keeps me going on tough days.


A few days ago, Bridget repeated something she has said a few times in the past twenty months, but I never gave it much thought until this week: “It makes me sad that he doesn’t look like his family.  He looks like the other kids with Apert, but not like his brother.”

It’s undeniable.  For one thing, he has the hair I’ve always wanted – crazy curls going in all directions.  I would kill for hair like that (and yes, I know that’s something only people with straight hair generally say).  Bridget used to have very curly hair, and Quinn had it briefly as an infant until we cut it and it never grew back the same way, but now both of them have fairly straight hair.  And despite a couple of relatives that have oddly curly hair, I sport the standard East Asian head of dark, straight strands.  Marshall has the standard Apert eyes – slightly protruding because of the shallow mid-face, which makes his eyes appear very large.  His brother’s eyes look more like mine.  It is true that in family photos, Marshall looks very different than Quinn, and I never processed that until now.


It’s probably due to the fact that I knew he looked different than the average child because of his syndrome, but I never thought about that difference in comparison to the rest of his family.  He’s adorable and sometimes, when I let go of my anxiety, I know he gets looks because of his cuteness rather than his differences.  One day, I wonder if he’ll ask why he looks so different than us.  It’s inevitable, I assume, and I hope we’re able to answer with facts, compassion, love, and empathy.

There is certainly a “look” to children with Apert syndrome.  There are certain physical features that most – if not all – share, so on Facebook, when someone new to the Apert group posts an introductory message, Bridget and I often share a knowing glance or nod.  The fingers.  The eyes.  The shape of the head.  The mouth.  This happened to me once months ago at the Hospital for Sick Children when a mother approached me to ask if my son had a craniofacial syndrome.  She was there with her slightly older son, who had a related syndrome.  She knew immediately that Marshall had one of a couple possible syndromes.

I’ll go back to something I posted at the very beginning, something I’ve brought up once or twice since – would I wish away his health complications if I had that power?  If he didn’t have Apert syndrome, Marshall would likely look like Quinn.  He would look more like a combination of Bridget and me.  He wouldn’t, however, have his perfect Marshall smile and his perfectly mischievous little glances at me.  It’s certainly selfish of me to think this because he would also not have to endure more surgeries in two years than I’ve had in forty, but since I don’t have magic powers and a time machine, I’ll take this Marshall any day of the year, thank you very much.

Through this blog, a few readers have told me they randomly found it and shared some experiences with me.  In some cases, they tell me about relatives or friends who were born with Apert syndrome decades ago, and others share their very recent experiences.  To all of them I say thank you opening up to me, and for sharing your stories of hope and love with me and my family.  The world is a scary place – scary enough without worrying how and if it will welcome your child who looks different, but all of you make it a bit less scary and a filled with a little more love.



Wearing his new hearing aid

I’m an elementary school teacher.  It’s a good job, I know, and one that is valued by a lot of members of society, even if the government tries its damnedest to make us think otherwise.  I spend the day entrusted with the care of other peoples’ children, and at night, I have my own two kids.  I try to keep my two worlds separate – no work comes home if I can help it, and my family life is kept out of my classroom.  That isn’t always easy, especially when I have a rough night with a lot of wake ups, but generally, I’ve been successful in separating the two halves.  For all my students know, I could have been a model in a previous life (I was, you know).


For perhaps the first time, I’m allowing the line between home and work to blur.  I’ve started reading R.J. Palacio’s now-famous teen novel Wonder to my class.  I don’t know why I waited until now to start, but now feels like the right time.  My students are loving it.  They ride the same waves of emotion and anger as me, and I think it’s genuine.  We’re still fairly early in the book, but their hearts are already breaking for Auggie as he starts at a school for the first time.  They’re cheering for his new friends, and the anger is palpable in the classroom when someone makes fun of his facial difference.

I’ve had to choke back tears a few times already.  I haven’t let them know yet just how personal this story is to me.  It’s amazing how much of a parallel I can draw between our lives and the book.  The same worries.  The same thoughts.  The same guilt and sadness. The same small victories.

At some point – maybe before we finish the book, maybe afterwards – I’m going to bring Marshall with me.  As much empathy as they have for Auggie, and as amazing as our conversations and discussions have been, I want to put a face to the story for them.  I want them to know how much it means to me that they care about treating everyone with dignity and respect, no matter the differences.  In this small way, maybe one day they’ll stop someone from teasing a classmate who is different, or they’ll tell a friend about their experience meeting someone with a craniofacial syndrome.  Maybe this is the one thing they take with them from our year together.

With March Break upon us, I’ve been reading ahead so that I can think about how I want to introduce them to Marshall, why I want to do this, and where to go with it after they’ve met him.  I have to be careful where I read the book, because my fists clench, I weep out of frustration and fear, and I often close my eyes to thank Auggie’s friends for being his friends.  For those of you reading this blog and following Marshall’s life, Wonder gives a surprisingly accurate glimpse into the lives of families with children who have a facial difference.  Do yourself a favour – actually, do us a favour – and read Wonder.  It’s beautiful.


Quinn in his great-grandmother’s arms

The people I held dearest in my heart have always been my grandparents.  As a child, I didn’t realize just how much I loved them, but once I hit my teenage years and I became intolerable just about anywhere else, their home was always a safe place for me to go and let my guard down.  When I was away for three years living in Vancouver, I missed them more than anyone else, and they were a major reason why I moved back to Toronto despite having started my teaching career on the other side of the country.

My fondest memories are of my grandmother cooking me incredible meals, and then sitting across from me watching me enjoy her work.  If not for her, I might have been twenty pounds lighter with more moderate eating habits.

When Quinn was born, my heart burst with happiness to see them holding their great-grandson.  I felt so fortunate to still have them around.  Three years ago, when they moved back to Taiwan after spending the previous thirty-five years in Toronto, I sat Quinn in their arms and took photo after photo, aware of the fact that this might be the last time I would see them, and the last time my family would span four generations.

My dear grandmother passed away a year ago, and last month, my grandfather died just short of a full one hundred years of age.  I never made it to Taiwan to see them after they moved back.  It was always the cost, the time, the fact I had my own family to take care of now.  It breaks my heart to know that Marshall never had the chance to lie in his great-grandparents’ arms, because if there’s one thing I can be sure of, it’s that they would have loved him unconditionally and would have looked past all of his differences without hesitation.

At night – sometimes ten times a night now that his teeth are starting to come in – when I go into his room to comfort Marshall, give him a bottle, or pat his bum, I whisper to him about my PoPo, his great-grandmother.  I run my fingers through his curly hair and tell him PoPo would have loved him, would be proud of him, and would look after him.  I am about as staunchly atheist as can be, but the urge to hold on to her and feel her around me makes me wonder sometimes if maybe she is in some afterlife looking down on Marshall and Quinn with her usual smile and carefree laugh.

Happy Birthday, Marshall

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.

Stretching at the hospital

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.

From the early days

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.

Pre-Superbowl pep talk

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.

Always ready with a smile

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.