“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.

Fingers

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My new favourite photo of Marshall – blurry because he’s a fast little guy now.

Last week, Bridget decided to show Quinn the first Jurassic Park movie (more than two decades old, but still holds up decently, if you care for my opinion; “best film score ever” raves Bridget).  The best part of the movie wasn’t the movie itself, but rather it was the experience of watching Quinn’s reactions and thinking back to my own first viewing of the movie.  This feeling was even more pronounced when we watched Back to the Future together the next night – a movie that is as firmly in my Top 10 as The Rocky Horror Picture Show, Pretty In Pink, and Mannequin.  I could relate to all of the emotions he was exhibiting and his reactions to the parts he could understand.  It brought to mind incredibly vivid memories of watching it as a nine year-old and the instant love that blossomed in my heart for Marty and George McFly and all things 1955 (maybe the best year ever for rock music?).

Most parents, I suspect, have gone through similar experiences as their children, and this is a way to relate to your child.  How many times have our own parents said to us, “I made such and such mistake when I was your age.  Trust me.  I know.”

Well, with Marshall, there is so much to which I just cannot relate.  I can’t relate to his two surgeries – he’s got me beat 2 to 1, but regardless, his were far more serious than my broken leg.  I can’t relate to spending months in a hospital bed.  I can’t relate to being born with the fingers on both hands fused.  And I won’t be able to relate to what effect his Apert syndrome will have on his future.

Tonight is Marshall’s last night with fused fingers.  Tomorrow morning, he goes into surgery, and 8 hours later, he will have fingers.  In a few weeks, when the dressing comes off for good, he will discover that his hands will be different from what he has known all his short life.  I can’t wait to see what he does with them.

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I’ll miss your old hands, Marshy.  They are, like you, beautiful.

Hands

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I’m in the midst of spending my first summer at home with the boys.  Last summer, Marshall was still going in and out of the hospital with every cold he caught, so we didn’t end up spending a lot of time together at home.  This summer has been one of fairly good health, so other than scheduled appointments and an MRI last week, we’ve lounged around the house a lot, gone to parks, and run down just about every Pokemon we could get our mobile phone hands on (that sentence is going to sound really dated in a few years). 

You’d think with the good health, things would be great, and in many ways, it has, but the calm before the approaching storm (more on that later) has given me the time and space to digest what’s been going on, and frankly, I’m angry.  I’m resentful, and I shouldn’t be by now.  I just can’t let it go.

Now that he has been out of the hospital for his longest stretch yet, Marshall appears to be making up for lost time developmentally.  He’s playful and he’s learning to communicate.  He’s on the verge of walking without holding on to anything.  Watching him interact with Quinn is a joy to behold.  Sometimes, I’ll ask him to touch Daddy’s face, and he’ll reach his little hand out as far as his stiff shoulders will allow, and he’ll gently touch my cheek. 

His hands were the first indication the instant he was born that something unusual was going on.  I remember seeing his fused fingers, and thinking maybe he had some sort of sac covering his hand, but in my mind, I knew something was up.  I’m not the only one who had a hard time holding his hand at first.  It was difficult to feel the lack of a space between his digits for a long time. 


I love his little hands now.  The feeling of a hand that smooth and unbroken on my face is still shocking, but there is nothing softer than the palm of his little curved hand.  He has adapted incredibly well to the limited mobility in his fused fingers and his small bent thumb.  He picks up food and toys with ease, and delightfully bangs away on the piano day after day.  It’s also the hands of other children his age, though, that bring up the anger in me the most. 

It’s ridiculous that I can’t get past this. I’m going to be honest – I still cannot look at photographs of friends’ newborn babies without getting angry, and I hate myself for it.  I can’t bring myself to “Like” Facebook posts where I can see fingers, and the mere sight of those damned Anne Geddes photos of babies in flower pots makes me hot with rage.

My rage is for my son’s surgeries in the past, and the one he’s about to have at the end of this month to separate his fingers.  My rage is for the fact he’ll never be able to bend his fingers like mine when he wants to play the piano or hold a pencil.  My rage is for the surgeries on his skull that he’s going to have over the course of his childhood.  It’s for the looks and stares he will have to endure, and for all the doubters who will write him off before they give him a chance.

Most of the posts on this blog over the last year have been pretty positive.  I try to keep it that way in case new parents of a child with Apert syndrome come across the blog are looking for comfort or perspective, but the reality is, I suspect a lot of people in my situation probably have bouts of anger and depression over the cards their child has been dealt.  Thank goodness for the internet and the presence of an online community of people who can lend me their experience and wisdom.  I’ve had a lot of comforting words sent my way by parents who have gone through everything I’m going through now, and for that, I thank you (especially you, K.M.S. – you have no idea how much everything you’ve told me means).

Maybe the anger I feel is what I need to carry me through the doubts that float around my head all the time.  Perhaps it’s the fuel I need to fight for my child when the public system is inevitably going to try to tell me he can’t do this or he can’t do that.  I don’t know. 

In those times, I look at his little face and his hands and wish I could switch places with him and take away all of his pain, all of it.  All of it.  Right now, tonight, I hate this world, but tomorrow, when I pick him up and he lays his sweaty curls on my shoulder, hopefully things will be alright.


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As I mentioned earlier, we’ve noticed that one of the things that makes Marshall happiest is music.  He does a little dance when he hears music, he’s mesmerized when I play the piano or ukulele around him, and a few times a week, he’ll sit on my lap at our piano and pound the keys for fifteen or twenty minutes at a time.

On August 30th, Marshy is going is scheduled to go into Sick Kids for an operation to release his fingers.  This eight-hour operation is a big one, and it is going to be really interesting to see how he reacts to having fingers for the first time.  His fingers will never work like mine – he won’t be able to make a tight fist, and his thumb is shorter and at an angle – but this should still make an enormous difference for his development.

I’ve never thought about how lucky I am to have my hands.  It will be exciting to watch as Marshall discovers his.

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“That baby looks different.”

 

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The boys hangin’ out in the car.

 

For a time in my teenage years, I was obsessed with the 1985 movie “Mask”, starring Cher and Eric Stolz, for a few reasons. First of all, Stolz played the role of a real person whose last name was Dennis, and secondly, the young man he portrayed had a rare condition that caused his face to be very, very different. I could not stop wondering how he survived the daily stares and comments without snapping.

I am almost passed the point where I am too nervous to hold Marshall up in the air like the opening scene of The Lion King and declare, “This is my child!!!” I make an effort to treat him the same way I treated Quinn at this age.

But I’m still a little nervous, knowing that sooner or later, it’s going to happen.

Well, it happened.

 

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Dropping Quinn off at camp.

 

I’ve been dropping off Quinn at his hippie outdoors-all-day camp each morning and picking him up in the afternoon, always with Marshall in my arms.  I love holding that sweaty meat sack in my arms, watching him curiously scan his surroundings with his big eyes.  The view is way better in the park than in a hospital room.

I’ve noticed some parents noticing.  For all I know, a few may already know about Marshy (more on that later). A lot of kids have noticed too, which was inevitable. Quinn is so used to Marsh he’s oblivious to the quick glances in his direction. There have been a lot of, “Oh, he’s so cute!” because he really is bloody cute.

On the way back to the car, I heard an older boy behind us say to his mother, “That baby looks really different.”

I froze inside but tried to act like I hadn’t heard anything.  I needed to think about what I should do. I continued buckling Quinn into his car seat when the boy’s mother spoke up.

“Oh, you mean his beautiful curly hair? It’s so nice.  You had curly hair too when you were his age.” And with that, I exhaled, got into the car, drove away, and never said a word. One day later, I still don’t know what I should have said, or if I should have said anything. I appreciate the mother’s response.  I think her words were a good answer in that situation.

I know kids have no filter and say whatever comes to mind. I don’t think this boy meant any cruelty; it was just an observation.

I love my little sweaty fluff, and I can’t let my anxiety about situations like this keep me from going out and showing the world how amazing he is.


 

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Out for a sweaty walk on a hot day.  I love to kiss his sweaty feet.

 

On another note, with summer holidays upon me, I’ve been spending a lot of time out and about with Marshall. Apparently, through the power of social media and Bridget’s online omnipresence, Marshall is a bit of a local celebrity.  Every few days to a week, I am stopped by someone who recognizes him. Just this morning, a mother out with her daughter stopped me while crossing the street to tell me she reads this blog. We chatted briefly and we introduced our kids to each other.

It has been uplifting to meet strangers who have entered our lives through Marshall’s journey.  Thank you to everyone who had been following along. Every time you stop to tell me you know Marshall, it gives me the hope that Marshall is going to leave this world a better place than it was before he entered it.

 

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Taking a bath in a sink.  Awww…how cute is that?