Word

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Fly Guy

Last week, Marshall turned two.  It was a pretty momentous occasion in our household.  There were lots of tears as I put together a slideshow for the family members that gathered to give him hugs and kisses and to celebrate the incredible journey he has been through so far.  Looking back at some of his baby photos, so many memories came rushing back that I had either forgotten or never remembered.  The trauma of being born means many babies come out looking a little different than they do a few years later, but throw in the tubes and bandages and oxygen hoods that were in, on, and around him for much of the first few months, and he looks like an entirely different child today.

We’ve been lucky enough to get into a class with a speech pathologist once a week where Bridget and I are learning how to teach language to children like Marshall who have communication delays.  Once a week (other than the weeks we have no class yet still show up, only to make our way back home!), we sit in a room downtown with about a dozen other parents and go through strategies, watch videos of our interactions with our children, and make plans on what we’re going to work on this week.

Bridget deserves the praise for getting the ball rolling.  Were I a single parent, I would never have the energy nor would I be aware enough of what’s out there to properly advocate for my child to receive these services.  Whether your child has Apert syndrome or any other condition that affects their speech, motor functions, or anything else, these programs are out there.  Luckily, in Toronto, we have a glut of services to access.

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Cupcake Face

These Wednesday night sessions – 2.5 hours each time – have the feeling of a support group or therapy.  You can see it in the faces of the parents when we’re watching videos of their play with their kids.  There’s tension, anxiety, fear, and hope.  After each video, we discuss the progress we see and point out the great things the parents have done to encourage communication and play.  The relief and joy is palpable.  When you’re living a life of medical appointment after medical appointment, positive feedback feels incredible. There is a shared sense of accomplishment in that room.

Marshall clearly understands most of what we say.  He can’t make me dinner (yet), but “Pick up your boots and put them by the door” is definitely understood.  “Yeah!”, “Okay”, and “Thbbbttttttttt” are heard all day, every day.  Now it’s up to us to give him the language he’ll need, especially if he’s going to tell me he loves me four hundred and thirty-seven times a week.

It’s one thing to teach children how to read – it’s very cool and rewarding when students in my classes suddenly realize they can figure out what those words on a page mean – but to teach a child their first words?  I can’t recall how Quinn learned words.  He just did.  With Marshall, we have to put in a concerted effort to implement our strategies.  Put in a lot of pauses.  Repeat words frequently.  Use gestures.  Use a variety of word types (not just nouns but verbs, adjectives, etc. as well).

Our words this week?  Up, help, and no.  Simple words that all of us take for granted, but imagine the power he’ll feel when he can say those words to us and tell us what he needs.  No more grunting or pointing and me guessing at what he wants.  Oh, to hear him say, “Help, Daddy!” will be wonderful.  “No, Daddy, I don’t want to play a board game”?  Maybe not that sentence.

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Q and M

For those of you who have been following along with Marshall’s life the past two years, you already know that sleep has been, well, keeping us up at night.  Some days, we didn’t even know what day of the week it was or if we’d ever sleep again.  His breathing was so bad, he would wake up every 30 minutes some nights.  The breathing issue is a bit better, but when he gets a cold, it’s still like sleeping near a congested rhinoceros in an echo chamber.

I don’t want to count my chickens before they hatch (mmm…eggs…), but something incredible just happened: I got my second full night of sleep in a row.  I’ve been sleeping in a bed with him lately, as he has moved from a crib to a full-sized bed.  Falling asleep can still be an adventure, but the staying asleep part has been fantastic this week.  TWO NIGHTS IN A ROW.  I feel like I could run a marathon this morning, if only I could run more than a kilometre without daydreaming about sandwiches and beef patties.  I watched him sleep last night for half an hour, his sweet little face snoring gently, his chubby cheeks rising and falling with each breath.  I risked a few nibbles of his face here and there before falling asleep myself.  TWO NIGHTS IN A ROW.  I wouldn’t trade that in for anything short of a lottery jackpot or a lasagna right now.

Hopefully, I haven’t put a pox on tonight’s sleep by writing about this.  If he does it again tonight, I’m celebrating tomorrow with a nice, cold drink of orange juice and soda water.  And cookies.

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Happy, rested faces
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Communication Breakdown

 

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One of Marshy’s selfies

 

“Yeah!” That’s about the extent of Marshall’s talking right now.  He can make a bunch of other sounds, and it does sound like he says, “Nonna” when he’s at his grandparents’ house, but other than that, “Yeah!” is his most common response.  Ask him a yes or no question, and he’ll say it with enthusiasm.  Sometimes, I wonder if he understands the questions, but he’ll shake his head if he doesn’t like what you’re asking.

“Kiss Daddy?” Shake.

“Give me a hug?” Shake.

“Do you love Daddy?”

“Yeah!”

At 23 months, he can sign for “more” when he’s eating, he has a sign for “water” which is, unfortunately, very similar to his sign for “stinky”.  That can make for confusing diaper changes.  “Daddy” was his first word.  “All done” is what he shows us when he’s full, and he can also show us “wash hands”.  A few months ago, I saw a Facebook memory come up on my homepage from Quinn’s second birthday.  At that age, Quinn was able to speak in simple sentences and have basic conversations with us (I think – it’s all a blur now, to be honest).  Marshy isn’t quite there yet.

Oh, there’s no doubt he understands everything we say, though.  This past weekend, I took his boots off at the back of the house.  I asked him to pick up both boots and take them to the front door, and he did it perfectly.  Since his surgery to put tubes in his ears, he has gained a lot of steam in his development.  It’s pretty amazing to witness his growth right now.

Still, it worries me that I don’t know how to approach the delay in communication.  Fortunately, we have just started participating in a special program at The Hanen Centre in Toronto for parents of young children with delays in communication.

 

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Taking his fingers for a test drive.  Get it?

 

Last week was the orientation session.  I’ll be honest – 2.5 hours a week on a Wednesday night, for several months?  I know it’s essential that we get some more information and knowledge about this, but I was grumpy as hell last week.  Tired from work, hungry, and all I wanted to do was sit down and do nothing.  And of course, the session was amazing and enlightening.

We were surrounded by a small group of parents in similar situations.  I didn’t really know what to expect, and thought that Marshall would be the only child (it’s just for parents – you leave your kids at home) with a syndrome, but I was wrong.  There was a lot of anxiety in that room, but you could feel the love from all of the parents.  The small group I was talking to shared their situations, and they were all in the same boat.  Some had less information than we have about our child.  Everyone had the same goal – to figure out how to give our children the tools they need to tell us how they’re feeling and what they want.

 

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Sleeping Beauty

 

I’m trying very hard not to go to “what ifs” with Marshall, like “What if he never learns to talk?”  I know it’s unlikely, but possible, and yet thinking like that does me no good.  My heart already melts whenever he I see the twinkle of understanding in his eyes.  He has started playing silly little games with his brother, his exuberant laugh ringing throughout the car on longer drives.  One day, I’m sure he’ll stop grunting to indicate disapproval, and maybe – just maybe – when I ask for a kiss, he’ll say, “Of course, Dad!”

 

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Excited for Christmas morning

 

2016 From Marshy’s Perspective

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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”

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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.

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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.

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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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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.

 

 

 

 

Surgery Day

*** will update the page as the day goes along

4:00 – Marshall is out of surgery a bit earlier than expected and is recovering from the procedure right now.  All went well.  Hands are heavily dressed and he has a long scar across his lower belly from the skin graft.


8:00 a.m. – He just went in for his anesthetic. We are headed home for a few hours to rest before coming back in the afternoon. The surgeon estimates that he’ll be done around 5:30 this afternoon.


 

6:30 a.m. -We are at the hospital and in the pre-op room. Marshy was not happy to be woken up at 5:30. Thank you Auntie Krista for the operating day outfit!

Watched a very, very brave little boy of about six years of age walk out of the waiting room and through the doors for his procedure.  These are tough kids. Saw some real courage and strength there as he fought back tears.  Whoever you are, I’m proud of you, little guy.