Big Brothers

20170616_193137
Bros

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.”

20170507_175803
The fam

“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.

20170605_063947
The hospital is a lonely place early in the morning

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.)

20170607_171459
Therapy play for the hands

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?

20170601_190617
Showing me how he gives himself hugs

 

I Wonder…

20170514_075127
Breakfast in bed

In 1994/95, I was obsessed with a television miniseries called Vanishing Son.  It probably doesn’t ring a bell.  I was off at university, away from home for the first time.  This was before the days of PVR (which I have still never used) and still long before YouTube introduced me to endless compilations of the best dunks EVAR! and soul-crushing unboxing video creators who are drawing salaries ten times higher than mine.  You see, Vanishing Son had something I had never seen before.

It had an Asian in the lead role.

Actually, it had a lot of Asians in it.  I couldn’t believe the show wasn’t more popular!  Russell Wong – okay, he clearly had one non-Asian parent, but close enough – had the good looks and moves and he was obviously going to revolutionize Hollywood.  It had countless Asian actors in small roles.  Who cares if they were still doing martial arts?  It was better than having the ignominy of seeing Mickey Rooney as Mr Yunioshi in Breakfast at Tiffany’s or what I call the “mix-casting” of Chinese, Vietnamese, Korean, Japanese, and every other “Oriental”.  They all look the same.  So what if the Vietnamese guy can’t speak Cantonese?  Just teach him the basics, right?

Vanishing Son

And to top it off, Vanishing Son starred Haing Somnang Ngor, only the only Asian actor to ever win an Academy Award for Best Supporting Actor, which he managed with 1984’s The Killing Fields.

I begged my mom to scan the Toronto Star’s tv guide which came with one of the weekend editions for the my new favourite show.  She would then dutifully set the VCR (the WHAT?) and on my once-a-month visit home, I would revel in the show’s glory, sure in the fact that finally – finally! – Hollywood would get Asian casting right.  No more pretend Asians.  No more the-wrong-Asians.

Clearly, I was wrong.  Casting directors still cast white actors in roles where the source material called for a person of colour.  Ableism is still rampant.  And somehow, Russell Wong never became the next Tom Cruise.


wonder

I love the book Wonder.  It made me cry buckets of tears.  I read it to my third- and fourth-grade students last year, and some of them cried – and this was before they knew how personal a connection I had to Auggie, the boy with Treacher Collins syndrome (which also causes a craniofacial difference, as does my little Marshy’s Apert syndrome).  A movie adaptation has been made, and there is no doubt it’s going to be a hit.  Julia Roberts!  Owen Wilson!  Mandy Patinkin!  No, really, I love these actors.  I’m going to see the movie.  I’ll probably cry.  Oh, actually, I know I’ll cry.  I have no doubt the movie will be well done, the acting will be impeccable, and the soaring soundtrack will have tears rolling down my face as they roll down Owen Wilson distinctive nose onscreen at the same time.

wonder-pullman-family
Owen Wilson – that could be me

But Auggie.

I’m so angry at myself for thinking about this, but, oh, Auggie.  The boy who plays Auggie is already a seasoned actor, and no doubt hits a home run with this role.  To play Auggie, I assume he had prosthetics and a ton of makeup applied each day, which must have been difficult.  The sarcastic side of me thinks it was probably not as difficult as actually having a craniofacial difference.

Treacher Collins is rare, but I wonder if there were any English speaking boys in the world who could have played Auggie.  Somewhere, someone reading this wants to punch me in my left-wing Social Justice Warrior face and say I’m being too politically correct, but I can’t help wondering what could have been.  I have no doubt the search would have been hard.  Would possible hearing loss and a cleft palate make it even more difficult to find a prospective actor?  I don’t know the answers to these questions I have.

But surely, no matter how gifted the actor, no portrayal could be as genuine as that coming from someone actually living the life.  I get that it’s cinema, and you have to take into account the matter of entertainment, which too often is on the opposite end of the spectrum from authenticity.  Still, wouldn’t we rather have gay actors in gay roles, black actors in black roles, and kids with facial differences playing kids with facial differences?

For all I know, the movie will be so good, I will forget these misgivings.  I look forwarded to seeing the blockbuster version of Marshall’s potential future, and not just because I think being Owen Wilson would be really cool.

20170507_175743
Marshy feeds himself these days

Friends, Soup Ladles, and Hospitals

(Too long, didn’t read? It’s okay.  My old friend Ramzi is running to raise money for his local Ottawa children’s hospital.  Please help him out.  It’s for a good cause.) 

18136741_1891607897532048_1825355500_n

It’s funny how life works.  I’m not the easiest person to get to know, I’m fairly moody, and don’t maintain relationships particularly well (Bridget – this should be my dating bio if we ever go our separate ways.  Imagine the deluge of responses!).  Generally, when one phase of my life ends and another begins, I just move on.  It’s not that I don’t value friendships so much as I just don’t have the energy, time, or inclination to nurture them.

When I was in ninth grade, I tried out for the basketball team.  I didn’t make the team.  Frankly, I was stunned.  The team was terrible.  Our coach (I guess he wasn’t technically my coach for more than the three tryouts) was a former Olympic basketball player. Surely he could see my skill through the big glasses, floppy, unkempt hair, and short shorts that I sported each morning.  I felt like I was walking into a room full of the castoffs from the Bad News Bears.

Since my dreams of becoming a pro basketball player disintegrated before my very eyes, my mornings would be free all fall and winter.***

“Come join the swim team,” suggested Ramzi.  I looked at him like he was a lunatic.  The swim team?  Put on some unflattering spandex Speedos and swim around an unheated pool until I threw up?  Yeah, sure.  Why not?

Before the first swim meet I went to, where I stubbornly wore long surfer shorts and was thrown into a 400m freestyle race, Ramzi and I were standing around the foyer of our high school with another classmate, waiting for everyone else to get there so we could leave for our meet.  Next to us stood a locker designated as the school Lost and Found area.  Out of boredom and mischief, we rooted through the locker and pulled out a ladle – a fairly nondescript soup ladle.  The ladle became our team symbol.  The captain would have us kneel by the pool, and in a Monty Python-esque show of ridiculousness, he’d bless us with a ladleful of water before each meet.  We would also scream out “L-L-L-L-L-L-L-LADLE!  LADLE!” every few minutes during swim meets just to be equal parts obnoxious and amusing.  It probably wasn’t so equal.

Eventually, we graduated from high school.  By then, I was in my full surly mode, no idea what to do with my life, and I was probably pretty hard to be around.  Ramzi moved away to go to school, I moved around to a few different schools, and we didn’t see each other for almost twenty years.

Until Marshall was born.

 


18136517_1891607834198721_2079780785_n

By 2015, I had been on and off Facebook for a while.  Every few years, I’d delete my profile to hide from former students and old acquaintances.  At some point, I came across a post of a friend where Ramzi left a comment.  Recognizing the name and feeling nostalgic, I clicked through his profile info, happy to see a few photos of my old friend.

Around the same time, Marshall was born, and I went dark online for a few months while I avoided anyone I knew.  I couldn’t figure out how to tell the world what was going on with our little boy.  Finally, about two months after he was born, I started this blog because I was tired of hiding and delaying the inevitable.  We were finally out of the hospital and for the first time since Februray 21, 2015, I could take a breath and assess the situation calmly.

Ramzi wrote to me soon afterwards.  I remember sitting on my bed when his message popped up.  As I write this, I’m getting emotional thinking about how much it meant to me.  He shared his family’s own ordeals in neonatal intensive care with me and offered me encouragement, an attentive ear, and kindness.  Twice, he met up with me when he was in town visiting family.  Our situations were medically different, but there were so many similarities in our experiences that it was incredibly reassuring to hear how well things were turning out for his family.  Maybe the light at the end of my tunnel was just that, and not an oncoming train.

In a few weeks, Ramzi is taking part in a 10km race to raise money for a children’s hospital in Ottawa.  Money raised will go to a hospital that has helped Ramzi’s family and countless others.  If you have been touched by this bit of writing, you’ve taken your child to a hospital, you have friends or relatives who access health care services frequently, or you just want to support my old friend, then please consider helping him reach his modest fundraising goal by clicking here and sending him whatever you can.  The health care system in Canada is phenomenal.  I have no doubt Ramzi and I would both be a million dollars in debt by now if we didn’t have access to our medical resources.  Take a walk through any pediatric hospital, though, and you can see how much more can and needs to be done.

Thanks for your help.

18155290_1891610580865113_1137763981_n

***For anyone interested in even more tangentially-related facts that actually have little to do with Marshall and Apert syndrome, I ended up quitting swimming in grade 12 and instead played on what can only be described as a basketball kibbutz.  Everyone made the team, our tallest player and centre stood barely six feet tall, we went 0-11, frequently lost by 50 or more points, and once scored a total of 8 points, a game in which our four leading scorers each had one bucket.  I did not score a single point all year.  I’m not sure why.  This is made all more farcical considering I had by that point become a decent swimmer.  If only I had paid more attention to either Mark Spitz or other Olympic swimmers who achieved fame, or perhaps parlayed our notoriety as the worst team in Toronto high school history by pitching the sports biopic idea to movie studios.  

You want more details, you say?  At least three of the members of our boys’ swim team became doctors.  Ramzi is basically a genius who lived in Hawaii for a while and maintained his teenaged physique and athletic prowess.  Another classmate became a lawyer.  I, on the other hand, am sure that of all of the boys – MEN! – on that team, I have by far the largest board game collection in my basement.  

Finally, at that first swim meet, the coach gave me the goal of finishing my 400m race in under 7:00 minutes.  My time?  7:01.  Eventually, I’d get down to under 5:00, but only after I ditched the surfer shorts and put in a few years of work.

2016 From Marshy’s Perspective

20161217_124856
Quinn’s post-gymnastics lunch, with his brother.

Last year around this time, I was exhausted from the busiest/saddest/angriest year of my life.  Marshall had just had his first surgery for his breathing, night times were chaotic, there was no sleep, and I was constantly worried about him.  This year, we’re still tired, and I’m still angry (but that’s just me), but a lot has changed.

Marshall is growing up a lot.  He’s walking like a champ, albeit a slightly wobbly champ.  Remember the AT-AT Walkers from Empire Strikes Back?  The ones on Hoth?  That’s sort of how he walks – slight forward lean, always looks like he’s going to fall but he doesn’t (unless someone wraps cables around his knees or tosses a grenade into his belly).  He’s still in the very beginnings of communicating with us through more than gestures, but he clearly understands just about everything we say to him.  He’s sleeping in a big bed now, which makes it easier for me when I feel like I need to lie down with him.  And his hands?  His hands look good, he’s using them to hold crayons and markers, and most importantly, he can hold my hand when we go for walks now.  Sometimes in the middle of the night, he’ll swing his arm over and rest his hand on my face.  I’ll leave it there, smelling his delicious little hands, thankful that we live in a time when they could separate his fingers.

Next year, I hope to have a little interview with him so he can tell you how he feels himself.  This year, the only response I’d get to any question would be either, “Dadda” or, more frequently, “Yeah!”

“Marshy – do you love Daddy?”
“Yeah!”

“Marshy – are you having fun?”
“Yeah!”

Call it poor parenting, but sometimes, when he’s really fussy while we wait for the doctors to see us at Sick Kids, I’ll just hand him my cell phone.  He loves it.  Maybe it’s the baby blue and pink phone case I have, or it’s the lit screen, but he likes to hold it and press the button.  Invariably, he’ll get to the camera and somehow switch it to the one in front and take some selfies.  No, I swear, that’s not my default setting.  Then he’ll sit on the ground and squeal with delight as he sees his face on the screen.  My little darling.  What a face.

Happy holidays, and thanks again for following along in this life of the sometimes exhausting and always incredible Marshall Ku (photos below are courtesy of his new fingers).

 

“That Kid Looks Creepy”

20161110_173356
Creepy?  I beg to differ.

Getting laughed at doesn’t feel good.  Most of us have probably had it happen to us on a number of occasions, whether it’s our hairstyle, weight, height, or clothes.  I’ve done it to people in the past, if I’m going to be honest about the topic.  I try not to be judgmental now, especially about differences.  Being Marshall’s father has made me a better person in that regard.

I pick my kids up at 4:30 from their caregiver in the neighbourhood.  Sometimes, on the way home, we stop by Quinn’s school and play in the playground.  Quinn runs around, burning off some excess energy, and Marshall stomps around, watching his brother on the monkey bars and laughing his innocent little laugh.  Today, we decided to hit the playground and kill some time before dinner.

Quinn runs off, Marshall starts his walk, and I call Bridget’s stepmom Julie.  A couple of minutes into the conversation, I see a little girl walk up to Marshall and say hi.  “Oh, a little baby!” she says, and points him out to two of her friends.  “Look at his funny fingers!  They’re so tiny!  Ha ha!”

I excuse myself from the phone call and hang up so I can pay attention to what’s going on.  I don’t step in right away, though.  I have enough faith in humanity (and children) that it’s going to turn out okay.  “That kid looks creepy.  Look at the creepy kid.  He’s so creepy.”  They laugh.  They point.  Marshall, oblivious to the words, laughs and waves at them.

My heart breaks, and inside, I start to seethe.  I look up at them as they walk across an elevated walkway on the playground structure.  I say, quietly but sternly, “You do not – ever – make fun of people for the way they look.  EVER.  It’s not nice.  Do you understand me?”  Thank goodness I’m a teacher and I have these talks all the time, because I’m not sure I would be able to control my anger and disappointment otherwise.

20161110_173406

They nod, walk off, and I hear one of the boys mutter, “Let’s get away from the creepy kid.”  All this time, Quinn has stopped playing.  He has heard the words, right from the start, and is crouching on the structure, listening.  I ask him if it’s okay if we go home early, I’m not feeling great, and when we get home maybe he can watch something on Netflix instead.

“Is it because those kids were being mean?  I’m not feeling too good now too.”  My heart breaks again.  It aches for Quinn because this will only be the first of possibly thousands of times he’s going to hear someone say something mean about his beautiful little brother.  I sit him down on the bench and we have a quick chat about how it made him feel.  He says he’s okay, but I can tell that it has affected him.  He doesn’t complain about the chat.  He just listens and converses with me, like he’s suddenly ten years more mature.  I kiss him, and off we go, on our way home.

I break down when we get home after telling Bridget about the playground.  I’m angry even though they’re just kids.  Just kids, but also just like the kids who are going to be around Marshall once he goes to school in just under three years.  I hope they remember my words today.  Maybe one day, they’ll see someone making fun of Marshall and suddenly remember the look they got from his father.

I’m sorry, Marshall, for any ignorance you will encounter, and I’m sorry, Quinn, because the responsibility and burden of being his friend, big brother, and protector will not always be easy to carry.

20161108_194032

All In the Family

20161101_165532

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.

20161101_170753


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.

20161031_181540

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.

20161018_110610

Update on Hands (graphic photos)

Before I start this post, please be aware that there are some fairly gruesome photos of his hands post-surgery at the bottom of the text.  I’ve included them not for sensational purposes, but in the hopes that any families who might one day be facing the same procedure will know what to expect. 

It has been just over two weeks since Marshall’s operation to separate his fingers.  Incredibly, he spent just one night in the hospital before being released.  I would have felt less anxious at the hospital, but every time we go in for a stay, I swear I come out a little more unhinged and jumpy.  So, armed with a prescription for morphine (for Marshall, not me) and his hands and lower arms heavily wrapped in bandages, we went home.

For the first few nights, sleep was scarce as Marshall was clearly feeling some discomfort in his hands, which is to be expected given the fact he had just had his fingers separated and skin grafted on to the newly exposed areas.  In addition, he had a long wound along his lower stomach, from hip to hip, where the skin for the graft was taken.

A week later, after a checkup to determine that the healing process was going smoothly, we began taking the bandages off to wash his hands and a few days ago started using a cloth to gently rub his hands in the bath.  As you can imagine, Marshall is not a big fan of this.  He whimpers as soon as I touch his hands, and sometimes, his hands are still so raw, there’s some bloody spotting on the cloth.

A parent on one of the Apert syndrome Facebook groups recently posted an article about PTSD in parents of children with special needs, especially when there was no indication before birth that anything would be different.  I don’t want to overstate or exaggerate what it’s like, but in all honesty, washing his hands in the bathtub is one of the most difficult things I’ve had to do in life.  While it does appear everything is healing nicely and headed in the right direction, his little fingers are still hard for me to look at, and I often have to close my eyes or quietly sob so he doesn’t hear me.  And the whimpering.  The whimpering breaks my heart.  The sadness in his little whimpers haunts me.

He will likely spend a few more weeks in bandages before they can stay off.  And hopefully, there are no complications or problems, and we can begin some therapy on his hands soon so he can learn to use his newly separated fingers.

If you have a weak stomach or don’t feel the need to see the photos of his hands, please don’t scroll down any further.  I’ve left a bit of space so you don’t accidentally look at something you can’t handle.  To all the families who have gone through a similar surgery,  if you have any wisdom or advice to share with me, I would love to hear it.