All In the Family

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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.

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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.

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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.

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Sleep

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Hanging out at a local coffee shop with my two fluffs

There exists an extremely rare congenital condition called Fatal Familial Insomnia which, according to Wikipedia, is known to be carried in the bloodlines of just twenty-five families worldwide.  The insidious and incurable disease progresses from insomnia to hallucinations, to an inability to sleep at all, to dementia, and finally death after less than a year.  As someone who has considered putting “Sleeping” on my resume as a skill, Fatal Familial Insomnia is my ultimate nightmare.  This is worse than any actual nightmare I’ve ever had, including the recurring dream I have about losing all my teeth (apparently, that’s a common one) and the living nightmare I have of not playing enough board games (much less common).

Life with Quinn as a baby (him, not me) was the typical sleep-deprived state, but there was always a light at the end of the tunnel.  He could soothe himself to sleep with his fishy monitor at a fairly young age, he sucked his thumb, he had his little rabbit lovey that comforted him better than any of my silly songs or back rubs.

Life with Marshall has been a lot more stressful.  Poor breathing and frequent hospital stays made any sleep training impossible, and until recently, the only way to soothe him back to sleep was through a combination of constant bum patting and bottles all through the night.  Clearly, this was not a long-term solution to the restless nights.  Bridget and I hit the breaking point more times than I can count, and were it not for my morning coffee, I’m not sure I could have functioned at work on a daily basis.  My students joke that they can tell when the caffeine hits me because I go from Bela Lugosi in a coffin to Bobcat Goldthwaite right at 9:00 a.m.

Last night, like a perfect bridge in a Meatloaf song, paradise descended on our household (unfortunately, there was no dashboard light).  When I woke up this morning at 6:00, with sounds of Marshall fussing through the baby monitor, I looked over at Bridget.

“I’ll get up with Marshall.  How many times did you get up last night?”

“Get up?  Not once.”  Incredible.  After he had a little crying fit at 9:00 last night, Marshall slept nine hours straight.  Then, another question hit me.

“Wait a minute – what happened to Quinn?  Where is he?”  See, Quinn likes to crawl into our bed at night, usually some time around 2 or 3 a.m.  We’ve stopped fighting it.  Too tired to fight it.  Also, he smells nice.  Yet last night, in conjunction with Marshall’s greatest night of slumber, Quinn also slept through the night in his own room (not for the first time, mind you).

If you’re counting, that also means I got a good eight hours of sleep, uninterrupted.  I feel like I’ve won the Powerball lottery, except at this point, the eight hours of sleep is a lot more helpful than one hundred million dollars.

I don’t believe much in luck, other than the time I wore the same underwear for every Denver Broncos game for a full season, but I’m going to have to buy a lottery ticket this week.

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Chomping on a banana this morning – after eating all of my scrambled eggs and tomato.

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.

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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.

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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.

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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.

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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.

Happy Half-Birthday, Marshy

Marshy gets an identical rabbit to the one his big brother has.
Marshy gets an identical rabbit to the one his big brother has.

Six months ago to the day, Marshall was born on a rainy, cold Saturday morning.  We were immediately thrown into an unexpected and challenging situation of fearing the worst and trying to learn about our precious little boy.  Over his first few months, we spent more than half of it at the hospital, sleeping by my son as he put up with test after test.  There were times when I didn’t know what would happen, and for much of the first week, we prepared for the worst, not knowing what the hell was going on.  I cried and cried, mourning for the loss of expectations, hopes, and dreams.

Six months later, I have learned so much about Marshall.  His resilience has been incredible.  Despite losing at least one pound each time he has gone into the hospital for a stay (none in almost 3 months now!), he is likely north of seventeen pounds now.  Despite one doctor’s pessimism, he appears to be tracking very well and loves staring at our faces, especially that of his older brother.  I have learned that the best way to see love is through the eyes of a not-yet four year-old boy who unconditionally loves his younger brother and has vowed to protect and love him no matter what.  I have learned that when you have wondered whether or not you will ever see the sun again in the darkest days, hearing your baby giggle as you kiss his fat belly is the best sound in the world.

And those expectations?  Those hopes and dreams?  I have all of them again.  There’s no reason not to.

Older sister Indie keeps Marshy company.
Older sister Indie keeps Marshy company.

My old friend Ramzi told me something during the first month of Marshall’s life that I have held on to for the past half year.  He said that I would see one day that I would stop hoping for Marshall’s life to be different and without the hurdles he has faced, because even a small change would mean the Marshall I have come to love would no longer be the same person.  At the time, I was in too much shock to believe it, but I think I do now.

It’s been a long time since my last update on our life.  Summer has been hectic and hasn’t allowed me much time to write.  Marshall has a lot of tests coming up, and the first of his many surgeries looms large in September.  First up, an MRI, followed soon after by a procedure on his respiratory passageways.  One at a time.  One at a time.

Thank you for joining us on this ride.

Thank you for your love and support. - From Marshy and Wallace Cat
Thank you for your love and support.
– From Marshy and Wallace Cat