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Monday, December 7

Parent of One-in-a-Billion Boy Seeks Same

The dad swoops in, whisking his son away from the playground. “We’d better get going!"

Moments earlier, my then 2-year-old son, Branko, had mustered up a weak “hello” for the boy after sticking his tongue out for a solid 30 seconds. It was his typical greeting at the time.

Branko’s voice is still weak from the surgery, the one that left him with two bright blue, full-leg casts. The swooping and whisking seems to be a typical finale for most playground encounters these days. I’m reluctant to admit it, but I know it was those casts. It’s always the damn casts. These situations don’t seem to bother Branko, but I feel a mild sting every time.

“Pretty sure casts aren’t contagious!”

I would never actually say this.

Even though I’m secretly proud of my wit, I dutifully curb all sarcastic impulses. I bite my tongue and subdue my face into a hideous but moderately believable fake smile. My motivation for being polite stems from one goal: to make some more friends.

Born with a rare genetic condition, a collage of health problems, and a handful of lengthy hospital stays, Branko has no difficulty engaging with his peers, and vice versa. Most of the other children we meet don’t seem to notice all his extra stuff – the casts, the oxygen tanks, the ankle-foot orthotics, the walker. In fact, most children beg for a turn in that walker too.

Don’t get the wrong idea. I have my people, my lovely people, the ones who drop everything to bring chocolate and beer the moment they hear Branko is sick. Even though I’m grateful for this support, something still doesn’t quite feel right. I haven’t yet made a close friend who is also parenting a kid like my son. 

To make our situation even more unique, my husband and I are the only two people on the planet with a kid exactly like Branko. His particular genetic mutation is a brand new, one-of-a-kind thing. There are no statistics for him; no clear trajectory for his health. There’s not even a name yet for what he has. I can only describe symptoms: weak bones, lung disease, skeletal deformities. I often wish I could mumble the name of a condition and just be on my merry way. 

Despite not being able to Google his diagnosis, I cautiously and appropriately try to make connections online, venturing into the territories of all things rare and genetic. Fully aware that I will never actually belong to these groups, I still manage to educate myself on anything and everything relating to Branko’s condition: Osteogenesis Imperfecta, Spina Bifida, Achondroplasia, to name a few. I reach out with words of support, desperately trying to convince these parents of the common elements between us. I rarely get a response.

One of the first changes we noticed in Branko’s bones was a slight bowing in his legs. The misalignment worsened as he grew, causing the tibia to shift and pop through his skin. Prior to this, many parents of typical children commented on the bowing, without truly understanding the significance of their appearance.

“My son’s legs did the same thing, and look at him now! He’s fine.”

It was as if we were discussing sunburn. I couldn’t listen to their remarks because our kids simply weren’t the same, genetically speaking. They weren’t part of my club, just like I'm not currently in the Autism or Down Syndrome Club. In a perfect world, I would have found my people. I don’t even know if my people exist, or will ever exist.

In a perfect world, I could sift through stories of others with the same mutation, and try to find something hopeful to latch onto. In a perfect world, I would discover a healthy 35-year old who overcame several bouts of pneumonia and a handful of surgeries. But these stories haven't been written. My son is the only one going through this.

We haven't yet been welcomed into the online world of special-needs parenting, and in real life, the playground parents can’t handle seeing a sweet little boy wearing two bright-blue casts. I get it. We are the cautionary tale. We are the ones people feel sorry for.  

Perhaps, and this is the most reasonable assumption, I’m still wearing the fear of the unknown, or more specifically, the fear of outliving him. Maybe this look lingers too long on my face, in my wrinkles, on my permanently chapped lips, creating the appearance of a person who would rather be left alone. In other words: maybe it's just me. And while this appearance might say (or scream) back off, this gnawing voice inside me wants you to know that something as simple as meeting my eyes would silence that voice. A quick hello, a high-five, an email, an acknowledgement that I exist, would silence that voice. 

Until I find my people, please play nice. My son might not officially belong in your world. But you are welcome in ours any time.

Saturday, November 21

Notes on a Dinner

I sit and stare, nervously taking a large a sip of wine. I'm concerned I'll run out too quickly, and one of my dinner companions will make a mental note to tell her husband later on in the night: Drinks too much/fast/loudly. 

I need to pee, but I'm hesitant to stand up in case the server comes back and I miss my chance to order another glass of Rioja. Because I'm going to need another glass of Rioja (maybe 3?) to get through the night. Fuck, let's be honest: I'd like to get through the next 5 minutes without either bursting into tears or saying something cruel and irrevocable.

Oh why did I do this? Why didn't I just say no? I'm fine with close friends. Terrible with casual acquaintances. Small talk is my worst enemy. Why did I come?

The server comes again, takes our order. I'm having the special.

I suddenly realize I'm doing plenty of listening, like, all the fucking listening, but not a whole lot of talking. They ask how my son is doing.


I hate hearing these words, regretting them so fast I internally scold myself. I can't expand on what "fine" actually means tonight, or tomorrow, or ever. I can't share the fact that my son cried for 40 minutes today while I tried to coax him away from the living room, away from his protective bubble of toys, towards the kitchen table so that he could eat dinner. That this morning we took him for an extra vaccination for kids with impaired respiratory function that required two giant needles, given simultaneously, one in each thigh. He gets to repeat this each month, all winter long.

That sounds brutal! Can't they space them out? Do one right after the other? 

I can't tell them how I've been searching for winter boots for a year now, in order to find ones that fit over his leg braces.

Have you tried contacting blank-blank-blank store? A friend of a friend of a friend works there. 

I can share only the most basic and bare-bones facts: he needs major surgery in less than a month to replace rods in his bones that his 4-year old body has now outgrown. I feel somewhat proud that he's outgrown something, like this surgery is exactly the same as if he had outgrown a pair of jeans and we went shopping for new ones. I feel a waft of kinship with my dinner companions. It lasts half a second.

I'm sure he'll be fine. Those doctors do this sort of thing all the time!

I so desperately crave these words. But I'm met with worried faces that scream, I'm glad I'm not you. 

I'm glad I'm not you. 

The pretend conversation in my head is always so much nicer, easier, tidier. I don't have to go home feeling anxious, or fear the shitty platitudes every special-needs mom is forced to swallow: I just don't know how you do it/You're awesome/He's awesome/I can't even imagine/God-blah-blah-blah what you can handle.

I listen, I nod, I'm mostly silent. I secretly count the number of times the conversation winds back to the woes and tribulations of my dinner companions. I hear the problems of their typically-developing children.

Haircuts, potty-training, tricycles, Too Much Netflix, skinned knees, runny noses, trips to Florida, back to school shopping. 

Nobody prepares you for how painful an innocuous list of normal parenting stuff will sound.

Tired? Really? You're tired. Try sleeping on a shitty hospital cot for even ONE night. You wouldn't be able to do it. I just know you couldn't handle it. Not the way I handle it.

I try to remind myself that things are just different for me now. I can't listen to another parent complain about snow or new glasses or ear infections. But I'm so good, an expert really, at placating the gnawing urge to crawl under the table. 

I listen, I nod, I'm mostly silent. And I still hope they invite me again.

Tuesday, November 17

Top 5 Reasons Why I'm Super-Excited to Spend the Holidays in the Hospital

My son, Branko, can accurately be described as medically fragile. The rap sheet for all the scary stuff that's happened to his body is beginning to sound fictitious: multiple fractured femurs, pneumonia, lung failure, rodding surgeries, and more. My husband and I have spent an extraordinary amount of time in the hospital with him. While most people would rather experience a rapid succession of mouthburn induced from piping hot pizza than a night in a children's hospital, it's become our reality, one that we can't change any time soon.
First (Hospital) Photo with Santa!

Branko's next surgery is conveniently scheduled for the middle of December. He will have brand-spanking-new rods put in his lower leg bones and left thigh bone. Before you feel sorry for us and get all oh-my-goodness-I-can't-imagine-the-horror-Can-I mail-you-a-gift-immediately, please understand that any holiday, especially the big kahunas like Christmas and New Year's Eve, are the most perfect times to be stuck in the hospital. Even though it was difficult to narrow down my list of the hundreds of things that are just super awesome about staying in the hospital during the holidays, I was successful in culling my top 5 for you:

1) Parking Becomes Slightly Less Awful.
I usually cringe with horror when I enter the parking garage of our hospital, which is located in the heart of a major metropolitan city. You see, the parking rates are actually pretty great compared to the 3 million dollars per day charged at most of the other lots. This means that our parking garage, which is supposed to be reserved for patients, is always full. Always. It's a nightmare. Even with an Accessible Parking pass - aka the best thing to happen to my stress levels in 5 years - we rarely find a spot.

But something magical and downright spirit o' Christmas-y happens to our downtown core towards the end of December: People Disappear! This is the only time of year when I don't have to circle the garage like a vulture, slowly and awkwardly following pedestrians to their vehicles. I especially appreciate not having to stifle my urge to yell "could you go any slower?" at snail-paced stroller folding.

2) Celebrity Sitings! 
I live in Canada, so my chance of a celebrity siting is much lower than yours, America. But, if you play your cards right/have a medically complex baby, CANADIANS CAN MEET CELEBRITIES TOO.

Everyone knows how famous people love to be seen with all the sick children of the world. Two years ago, after my son had a cardiac arrest, my family got to meet Rob Ford, the infamous crack-smoking former mayor of Toronto, in our hospital lobby. While meeting Rob Ford didn't quite alleviate all the pain, fear, anxiety, and splashes of PTSD that went along with almost losing my son, it was still so exciting. I never meet anyone famous!

3) Saying No Thank You to New Year's Eve Shenanigans.
By far, the best by-product of having a sick child is saying "nothing" when people ask what I'm doing for New Year's Eve. It's much preferable to just sit in a stuffy hospital room consuming KFC and chardonnay instead of seeing my closest friends. I look forward to sleeping on a vinyl cot/torture device while my friends are out dancing and laughing and having a pretty great time.

I will especially appreciate the nurse's sad Tommy-Lee-Jones-eyes after she informs me the hospital won't allow two cots in the room, meaning husband and I will be forced to spend our first New Year's apart in ten years. And while I sit alone, covered in chicken grease and cursing myself for running out of chardonnay, I will definitely remember to tell myself over and over: at least I'm not out in the cold waiting for a cab! And the more I say it, the more I might even believe it.

4) The Ultimate Excuse to Avoid Every Annoying Thing About the Holidays. 
Being stuck in the hospital caring for a sick child absolves parents of all responsibility with the outside world. Finally, I can confidently say "no thank you" to lavish holiday parties, warm hugs from family and friends, and especially, buying nice things for the people I love. Blech! Gross.

5) No Line at the Hospital Cafeteria.
This is anyone's dream come true. Since there are usually fewer people around during the holidays, there's rarely a line. Instead of waiting 10 minutes to pay for my fifth bag of Doritos that day, I might wait only 7 or 8. In addition to reduced line-ups, I will especially appreciate the random holiday hours. Even though I have no comprehension of why they need to close at 4 pm on December 23rd and then 3 pm on December 24th, I like the added challenge of having to race downstairs before the doors lock. (It's called cardio, people.)

I feel like I need to apologize. Here I go again, bragging about all the wonderful perks and special treatment us hospital parents get during the month of December. I should really stop trying to make everyone jealous of this glamourous life I lead. I would never want to be one of "those" moms.

Forgive me?

Sunday, September 27

The One Sentence Parents Need to Stop Saying

As a self-certified, part-time, mama blogger, I read all the stuff. I’m borderline obsessive with reading every single tiny thing out there that might have anything to do with children, or more specifically, rare genetic diseases. I may have even reached out to you (yes, you!) over the past year. And you probably ignored me. But that’s fine. You were probably busy calling insurance companies, dashing to appointments, and changing your kid’s umpteenth diaper of the day. I forgive you.

But there’s one sentiment I can’t overlook, one that insidiously appears in the minds of parents who are going through something really bad, something unexpected and awful, something that hits them especially hard, usually somewhere in the gut. A bout of pneumonia. A hospital-acquired infection. Uncontrolled seizures. A surprise G-tube surgery. A lengthy NICU stay.

“At least he isn’t going home with an oxygen tank.”

I’ve read this sentence too many times. And it stings. It’s weird and gross and makes me feel icky inside. These feelings are partly due to the fact that my son spent 17 months on home oxygen. And even though he is recovering nicely, I still feel all the feelings.

The tricky thing with lung disease is that typically, you can't just fix it. Surgery is too risky, because how can you safely anesthetize someone who can't breathe? (Answer: you can’t). There are very few options.

With lung disease in a child, you can do two things: a) wait for those pesky lungs to just, you know, hurry up and grow, and b) stay away from absolutely everyone in the world in the hopes for a virus-free kid. Our story had a happy ending: we were able to wean my son off oxygen slowly, and now he’s a walking, talking, slightly argumentative 4-year old boy.  

It wasn’t so bad, having an oxygen tank lingering around him all the time. It was just one more thing to pack in the car, like diapers or sippy cups full of milk. The only difference was that running out of oxygen wasn’t a problem that could be solved with a trip to the 7-11.

But I’m not here to talk about my son. I want to address this silly game that we all play with other people's kids.

I will begrudgingly admit, I used to play the “at least it’s not (fill-in-the-blank)” game. I used to scan the main foyer of our children’s hospital, gazing at cancer patients, amputees, blind children, kids with facial differences.

At least he’s not them.

What I didn’t notice at the time were the other parents, playing the same game with the other children, perhaps even playing it with my son.

At least it’s not cancer.

At least he doesn’t need a wheelchair.

At least he can swallow.

At least he can breathe on his own.

Even though it may be comforting to think these thoughts when faced with an awful and unpredictable situation, it won’t actually help. Saying these things, even in the confines of your private life or personal blog, doesn’t help anyone.

Can we all agree to stop playing this game? There are no winners.  Saying “it could be worse” is one thing, but using another person's actual, real-life situation, such as having cancer or depending on supplemental oxygen, is denigrating. It belittles those who have kids enduring chemotherapy, who are struggling to walk or talk, or who require an extensive list of medical equipment in order to eat or breathe properly. I hate the feeling of being someone else's 'worst case scenario.'

Because you know what? Being on oxygen isn’t the end of the line. It’s not the end of the world. Starting chemotherapy isn’t the end of the world. Having a feeding tube surgically inserted in your kid’s abdomen isn’t the end of the world.  It’s the start of something new and difficult, yes, but it isn’t the end.

It’s only the beginning.