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.

FINE! HE'S FINE.

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.



Monday, August 17

Everyone's A Doctor: The Best of the Worst Medical Advice We've Received

It seems as if everyone is a doctor these days.  Thank you, internet!

I am not a doctor. I haven’t even made it to season 4 of Grey’s Anatomy (yet). However, I have a son who attracts lots of attention from amateur doctors, people who think they know a thing or two about medical science. Here are a handful of medical clich├ęs people have shared with me over the years.


 1) I would never get the flu shot, it doesn’t work, and I would never give it to my kid.


Personally, I think that’s a really bad idea, but beyond that, I’m pretty sure I wouldn’t let my son out of the house if the flu shot were unavailable. For him, influenza means a hospital visit with the possibility of a surprise intubation. (And FYI, a surprise intubation isn’t any more exciting and fun than a planned intubation).

If you don’t want to get the flu shot, that’s fine. But please don’t tell me about it, because I will literally obsess over whether you have sniffles or not until flu season is over. And please, never mention that the flu vaccine “doesn’t work.” For my own sanity, I need to believe that it works.



2) My best friend’s cousin’s daughter’s Aunt had the same thing as him and she’s fine now!



Part of the reason why I started writing about my son’s medical condition was to make the complexities of his condition more clear, for both myself and the people in our lives. He has a one-of-a-kind genetic condition; there isn’t even a name for what he has. No one else’s symptoms are quite like Branko’s. Nobody. Noone. Zilch. Numero Zero.

By casually mentioning that someone had something similar and is now “fine”, the severity of his condition is downplayed. It’s a bit insulting. Having bones like his, ones that randomly grow however and wherever they feel like, is serious business. It’s not a sunburn. It’s not a canker sore. It’s not even the same as when your friend Sammy had a cast for two weeks after falling off a pogoball. 

Also: what exactly does "fine" even mean? Is "fine" the same as being an average, healthy person who doesn't need a mobility device? We aren't really striving for a typical definition of "fine" over here; I suppose our definition is a bit more relaxed. "Fine" at our house means happy and stable, whether he's in a wheelchair, a hospital bed, or running around the backyard with no pants on.



3) All those chemicals and drugs can’t be good for him!!


There seems to be a growing trend where completely sane and rational people, without a chemistry degree in sight, all of a sudden become experts on “all the chemicals” in our daily lives. My son wouldn’t be alive today without plastics, drugs, or vaccines.  Please don’t be offended if you catch me rolling my eyes during most conversations on the avoidance of preservatives, food colouring, GMOs, sunscreen, or Kraft dinner.

I once saw a person wrinkle her nose when I shared that we were giving Branko morphine as part of his pain-management plan. He had just had major orthopedic surgery on both legs, in which the bones were literally ripped apart and put in again with metal rods.

“Should you be giving morphine to a child so young?”

All of a sudden, I was frightened of Big Bad Morphine. I second-guessed myself at first, but my gut said stick to the plan. Turns out, doctors usually know what they’re doing. Morphine worked wonders for Branko, getting him through the initial, more painful period, and allowing his bones to heal. 

In conclusion, I love morphine! In fact, I love and appreciate almost all chemicals! I may even write a love-poem-turned-musical-number called “Phthalates: I Dig What You Do To My Medical Plastics.”


4) It sounds like he’s been misdiagnosed! He should try going to ______ Hospital!


Uh-oh. Wait. Not only is this very confusing information, coming from someone who isn’t a doctor, but it also makes me nervous. Have I been doing everything wrong? Should I drive six hours to that other children’s hospital? Are there other surgeons with more experience who I should be seeking out? Why do I suck at being a hospital mom?!

This advice came to me from another mom of a boy with a genetic disease. She felt strongly that Branko was misdiagnosed and had the same thing as her son.

Perhaps she felt we might have a stronger connection if our kids had the same thing. She had a negative experience at our hospital, and felt a need to sway people from it. Some would definitely find her advice helpful; I found it a bit sad. We had a chance to bond over our shared experiences, to be special-needs-mom allies, partners in crime. But it didn’t turn out that way.


Over the years, I've become more savvy at deflecting medical advice from non-doctors. My secret: I kindly say "no thank you" followed by, "I get all my medical advice from Dr. House and Dr. Grey." That usually does the trick.  

Sunday, June 28

Please think of the skinny babies

It's hard to be a skinny baby.

I mean, I don't exactly know how a skinny baby must feel, because A) I wasn't a skinny baby and B) I don't even remember being a baby.



But my son, Branko, was a skinny baby. Having a rare chromosomal mutation meant his physical appearance was slightly different than average. He was skinny, and I mean really skinny, as in less than first percentile skinny. His head was less round and more oval, with an unusually long neck due to extra space between the vertebrae in his spine, making him look slightly more giraffe-like than infant-like. He was, and still is, the cutest thing I've ever laid eyes on.

And let me tell you, it was hard. Not for us, his parents, but for the rest of the world. Specifically, the rest of the world's eyes. Branko didn't quite fit the expectations of what a baby was supposed to look like.

It must have been hard for the random strangers who, after asking his age, would wrinkle their noses in disbelief. It was as if I had just told them Branko was actually a baby rocket scientist with a freshly completed PhD dissertation. Nobody wanted to believe he was only X number of months old.

Their eyes and furrowed brows would radiate some obvious thoughts: Why doesn't this baby weigh the same as my nephew Johnny who seems much fatter and juicier and should I remind this mother that she's supposed to actually FEED her baby??

Apparently, skinny babies can rapidly sting the eyes and hurt the brains of people who are used to seeing all those gushy, squishy, and round typical babies. Some new parents even provide weekly weigh-in updates on Facebook for their newborns, so everyone is aware their baby is NOT of the skinny variety.

"3.25 weeks and 15.789 pounds already!!!!!"

It was easier in the wintertime, because I discovered that if I put a turtleneck, legwarmers, winter boots, a one-piece snowsuit, two hats, and a scarf on my skinny baby he could usually pass for "normal." We would even receive positive attention in public, including the odd "enjoy every moment" or "it goes so fast" or on a rare occasion, "he's adorable!"

Skinny babies don't get much love in any sort of group situation, especially when there's chubbier babies sitting around, being all cute and roly-poly. They suck up all the attention in the room, garnishing comments like "I want to eat you" or my personal favourite, "I just can't handle the cuteness!!!!"

I used to wish for someone, anyone, to want to eat my baby.

Most of the time, I felt pathetic. As his mother, it was my number one job to feed him and keep him healthy. And I had failed. In fact, finding that one thing, the magic bullet to make him gain weight became my obsession for more than two years.  I naively thought food was going to “cure” all his medical problems.

If only he would eat. His bones would be strong. He would definitely walk. We would also win the lottery, of course. All our problems would be solved, forever and ever!

My obsession with food and weight faded abruptly when Branko had his first pneumonia at the age of two. We had our first experience with the ICU, a close call with a breathing tube, and a brand new attitude towards eating.

Being forced to hope for your child's survival makes all other hopes seem ridiculous and extravagant. We realized it didn't matter if he ever ate kale, or tried carrots, or looked a bit plumper in the face. When we were discharged, I honestly didn't care about what, or how much, he was eating. As long as he wasn't on the verge of dehydration, I was happy.

Since then, we've realized that a scarce appetite, ongoing respiratory problems, and a few sensory issues are most likely the cause of his lack of interest in food. He now eats the same thing every day, for breakfast, lunch, and dinner. I am sure a dietician would gasp in horror at the lack of variety, but whatever. He's walking, talking, and not lying in an ICU bed. That's what matters.

If you are lucky enough to meet a skinny baby, or even a baby that doesn't quite look exactly like every other baby in the room, pay close attention. Even though it might be hard to resist the delicious, chunky thighs of those other babies, please, YOU MUST RESIST. Hold that skinny baby, maybe pretend to eat him (but just pretend). The attention might make a new mom's day.

Monday, June 8

My son is getting better, but here’s why I’m terrified

Over the past three years, most of the updates on Branko and the current status of his health were plagued with negativity. It’s not like we wanted to make everyone we spoke to feel like a pile of garbage. Things were just really bad for awhile.

Fast forward to Spring 2015, a.k.a., the time when everything good happened at once.  Branko started more intensive physiotherapy in March, and took his first steps less than three months later. After some positive test results at the hospital, we received the go-ahead to start weaning him off supplemental oxygen. As of this week, he is now completely oxygen-free. Branko received a highly coveted spot in a specialized, therapeutic junior kindergarten program for September.  We also recently convinced him to start eating corn. 

Even though these are all amazing things, I can’t help but be a bit nervous. We were deep within high-alert panic territory for so long, and now we’re venturing into slightly more relaxed terrain. There are things that don’t come naturally to me anymore. There are other things that outright terrify me.

For example, I have forgotten how to have a regular conversation. Whenever Branko was in the hospital, especially the PICU, my mind would solely be reserved for him. I would memorize his ventilator settings and morphine drip concentrations for no other reason than to feel like a more useful part of his team.

Trying to converse with that perpetual brain fog was very difficult. I never asked anyone else how they were, how their kids were, or where they were planning to summer. It’s not like I didn’t care, it’s just that my mind was mushy. Each time I attempted a regular conversation my mind would clog with worry. Is his oxygen high enough? Is his heart rate too high? Is he dehydrated? Did I label his food in the nasty hospital fridge?

In addition to having to re-learn how to talk to my friends, I need to get used to taking him out in his new, oxygen-free state. In crowded, public spaces, nothing screams “Back the Truck Up” like a nasal cannula on a kid’s face.  People make room for you. Yes, there may be pitiful stares and intrusive questions, but for the most part, you don’t have to wait for a swing at the park. I have been told to Go Ahead, Dear in checkout lines more times than I can count. Of course, the flip side of these niceties is that I began to expect them, and became quite confused every time someone didn’t let us go to the front of a line.

Now that he’s off oxygen and can walk with support, I fear that he’s going to pass for “normal.” I am afraid that people aren’t going to be extra careful with him. I have no desire for people to treat him just like everyone else, because he’s not like everyone else. He has fragile bones and arms that don’t quite work the same as “normal” ones do. He has a high pain tolerance as well, so it’s not always clear when there’s a serious injury.

We can do so many things now that he’s off oxygen – road trips, staying at a hotel, and flying on a plane – and these are the things I need to focus on. For the first time, there’s room in his wagon for his little sister to sit. I can now see his entire tiny face, and spot his boogers from a mile away. We have so many wonderful adventures ahead of us. I just hope I can always remember, even vaguely, how hard things used to be.



Wednesday, April 29

Hospital Stays and the Curse of the Chocolate Timbits

My almost 4-year old son, Branko, has a sometimes scary chronic illness, and has had hospital stays anywhere between two and twenty-four days.  I had never even been inside a children's hospital until he was first diagnosed. I had never known anyone who had a kid with a chronic illness. I was a new mom and already overwhelmed by the newsletters, the mommy group chats, and all the parenting advice from all the others who had done it all flawlessly before me.

Here we were, trying to navigate the uncharted waters of a rare genetic disease, while also trying to figure out all that regular baby stuff. How many hours could he stay awake in between naps before we ruined his chances of getting into University? How many hours a day should I carry/wear him so that he makes the most number of friends in kindergarten?  I had to sift through multiple expert opinions, picking out the ones that might possibly be applicable to someone like Branko. It's still a bit hard, especially with the steady flow of articles espousing the dangers of too much or too little playtime/food/stimulation/plastics/fun/preservatives.

Branko is now four years old, and he is kind of kicking butt in the health department right now. People often say, "I just don't know how you do it!" To be perfectly honest, I don't know how we do it, either. All I know is that my husband and I are really great at making split-second decisions and inventing our own parenting rules on the fly. Here are a handful of the seven thousand "regular" rules we've broken, just in case you are a parent who needs to make yourself feel a bit better right now.

The Experts Say: No screen time for the first two years
Our reality: We birthed a YouTube Addict

Branko has unlimited screen time when he's in the hospital. And it's not just the ipad. The TV usually needs to be on as well. Not too long ago, he had a slight addiction to Kinder Egg "unwrapping" videos on YouTube, the ones that feature a pair of hands unwrapping, cracking open, and then playing with the toy inside each egg. He would watch these, over and over and over, eyes glazed and mouth slightly ajar, ready to shout "AGAIN" once the video ended. If we were too slow, he would cry.

If you are at all intimately familiar with YouTube, you might know there is an endless supply of related videos off to the side, and as he got older and smarter he became proficient at selecting videos on his own. Finally, I thought, some ME time! I would sneakily put one headphone in, attach it to my secret ipad and start up a new episode of Breaking Bad. I was rarely ever interrupted, except to speak with doctors and to check his playlist for the unlikely instance of something inappropriate for kids, because it's the least I could do.

Right now we cannot even say the words "you" and "tube" in our home, in any combination or context. I once said "yoo hoo" as in "look over here!" I quickly noticed his excitement and immediately confirmed that no, YouTube doesn't work anymore. They deleted it from the internet, Branko, because of all the ipads being flung out of moving vehicles.


The Experts say: Four Servings of Fruits and Vegetables Each Day
Our reality: Chocolate Donut Marathons

For exactly 11 days, while in the hospital, he ate only chocolate donuts (Timbits, actually) for breakfast, lunch, and dinner. We gave him loads of other options. His respirologist would laugh: At least he's getting some calories! No, impossibly-young-and-well-rested-doctor, you don't have to stare at his chocolate-stained teeth and his maniacal grin while he holds both an ipad and a cellphone, watching the creepy "Superbabies" episode of Dora over and over and over on the TV. You didn't panic when the Tim Horton's downstairs ran out of chocolate donuts, which of course would only happen in our hospital, during this particular hospital stay.

I would also like to point out that Branko developed a fondness for real Kinder Eggs at some point last year. Of course, he was only interested in opening them and playing with the toy, and not the actual chocolate. He would either throw it on the floor or toss it my way. "Here you go, Mama." Thanks dude.

The Experts Say: Maintain a Consistent Bedtime Routine
Our reality: Bedtime Shmedtime

Kids are supposed to have schedules, right? They apparently thrive on consistency. Well, sorry, Today's Parent, we have zero consistency when Branko's sick. We are constantly being interrupted by these horrible monsters* with stethoscopes and needles who go from room to room in an effort to traumatize as many people as possible per hour. They never come at the same time two days in a row. And it's never the same person two days in a row. And why are vitals taken every three hours today when they were every one hour yesterday? And why do physiotherapists only enter the room at the exact moment Branko's eyes close for a nap? WHY WHY WHY.

Putting a child to bed in the hospital? Need some useful tips? Sorry, I got nothing. It's terrible. Like Vegas, it always feels like it's the same time of day, so when it is, in fact, dark outside and you share this with your child, don't be surprised if they laugh at you for a minimum of three minutes. Don't be surprised if you let them watch Jurassic Park until 11:30 pm without even fast-forwarding all the parts with the British "clever girl" dude who's the master of the velocirapters (or so he thinks, right?). Don't be surprised if you find yourself buzzing the nurse and trying to convince him to give your son a splash of the ol' tylenol/morphine combo that has the dependable result of at least two hours of uninterrupted sleep.

*I have never actually thought that doctors, nurses, and therapists are monsters. I do, in fact, think they are the best and bravest people on the planet and they are only doing their jobs, even when they wake my son up at 3 am for his morphine

The Experts Say: Make Bathtime Fun!
Our reality: He has fake baths (so that people don't judge us)

I'll admit, I am a little hard on people when I see their dirty, typically-developing child walking around with his fist up his nose. Sorry. My first thought: gross. My second thought: my son never looked as awful as your kid and he's had six casts in two years. That's a total of 26 weeks where we didn't give him a proper bath. Our trick? Just fake it. We wipe him down whenever we see actual gunk on his body. And we usually do it in front of a nurse to emphasize how we are truly great parents.

There is no way to make the process of cleaning a sick child fun. I'm sure there is a logical reason behind it, but the last thing Branko wants, ever, is water touching him. He hates having anything removed from his body once it's stuck on there. I am quite positive he has an ECG sticker somewhere on his chest from eight months ago.

We sometimes play a game where I smell his feet and pretend to pass out. He loves it! It still gets him every time. The thing is - I have actually come close to passing out. There is nothing like stinky-little-boy smell combined with 6 to 12 weeks in a cast smell. Even though he smells awful he at least looks clean. And appearances are what really matter, right?

Branko also wears leg braces and thick, thigh-high socks, and these things are just plain difficult to put on. It's so difficult that I have been known to just leave them on for a few days at a time. If you are a visual person, imagine attempting to put pantyhose on either a zebra or a feral cat. I mean, you'd get the job done, of course you would, you brilliant thing! But you would have many, many stories afterwards. And like me, you would try your best to avoid doing it again, at least until his father mentions that the socks have been on for a week (or three).

I realize that I shouldn't be too hard on myself. I get it. These rules are the "best case scenario" when parenting. I absolutely realize that children in the hospital need to be made comfortable, and if that means Kinder Eggs, Jurassic Park, and stinkiness for short periods of time, then so be it.

As I mentioned, Branko is slowly getting better. He hasn't been hospitalized in about eight months, which is a world record for him. We are now in the process of trying to establish a consistent routine, which includes three actual non-chocolate meals every day. So far, it's going really well, except for the fact that I have to bribe him with one hour of TV, two hours of ipad, and sometimes, a five-dollar bill.  I'm not exactly used to being strict and stern and consistent with him, especially when my go-to parenting mantra used to be, "just do whatever."

To all the parents out there who don't have chronically ill kids - I just don't know how you do it!


Sunday, March 15

Oh Nina! (aka Nina Las Vegas, Nina-nina-palachinka, Neeners)

Oh my goodness, my little Nina is turning 1 very soon!

Here she is:

She wasn't always this cute. Kidding! Of course she was always this cute, she is the cutest and happiest and best baby ever. I am hoping that if she sees this one day she will be able to appreciate the fact that I devoted 7 minutes of my very precious time to a stunning collage CONTAINING PHOTOS OF ONLY HER. When I reach those hard parenting moments and have to explain why she can't exclusively eat "just" a Kinder Egg for dinner every night, like her brother, I will think back to this moment to remind me HEY I TRIED MY BEST LOOK A COLLAGE.

She came into our lives during a pretty hard time, and I wrote something about that over at BLOOM. You can read it, or not. Once again, do whatever you want! I can't make you read things!

http://bloom-parentingkidswithdisabilities.blogspot.ca/2015/04/letting-in-light.html





Thursday, February 26

I fell in love with a baby on the internet.

My heart is broken in a million pieces right now. I can't stop crying, and I've been attempting to hold both my children in my arms for the past hour.

A 10-month old baby from New Zealand died suddenly last night. I'm sure any sane, rational person would probably agree that yes, this is very sad news, but not sad enough to warrant the reaction above.

I'm afraid that I loved this baby. I fell in love with her about 9 months ago, right after I gave birth to my girl, Nina.

Her mother started a blog while she was still pregnant, after doctors discovered there might be some minor complications. She ended up having a daughter who, along with various other health problems, was both blind and deaf. On top of everything else, this blogger was a single mom. She was doing this on her own.

Her name was Eva, and she had CHARGE syndrome. Her name was Eva, and she was wonderful. And now she's gone.

My first feeling towards Eva was sadness. I was profoundly sad about her situation. I couldn't imagine having to accept the challenge of learning to communicate with a blind and deaf person. I quickly realized after about five minutes of reading this mom's writing that this baby didn't deserve my sadness. She was so deeply loved. She was perfect.

And then, as I started to read more on Eva, I realized I was addicted to Eva. I loved learning about her upcoming surgeries and appointments, her new sounds and movements, and I was especially jealous of her summertime activities in the Southern hemisphere. I was hesitant whenever I commented on the blog with words of support. What the heck did I know? Who did I think I was? Some special-needs-parenting expert? Sit down, Mrs. Zakic.

I called my husband when I heard the news this morning - and I immediately apologized for being so upset.

"This is stupid. I've never even met them."

As much as I try, I can't shove these intense feelings away. I refuse to stop being addicted to Eva. I'm going to keep talking about her, sharing her story, and I'm going to keep hugging my kids just a bit harder every day because of her. If you have a baby, a puppy, a lizard, or whatever you choose to love right now, go ahead and wake them up. Give them a giant squeeze, and remind yourself how wonderful their life is.



If you have a moment, please read about the start of Eva's life here. And if you have even two moments, please leave a nice comment for Eva's mom. She needs absolutely everyone in the world right now.


Friday, February 20

To the Mom in the Hospital Waiting Room, Part 2

There are days when the internet reminds me of a piece of mystery garbage, one that I can't quite locate on my kitchen floor. The insidious smell is usually just the right amount of foul for me to establish that, yes it exists, and no, I won't have the energy any time soon for a search-and-destroy mission.

Most days, I try to approach the internet with a plucky, come-on-how-much-worse-could-things-be-today type of attitude, much like how I feel about the smell(s) coming from the North (or maybe East?) side of my kitchen. I don't have a good relationship with the internet. I don't last very long before thinking I'm way too fat, way too pimply, way too sensitive, or just not cool enough. In addition to my very long list of personal and life problems,  I have to face things like Gamergate, Measles, and Cosby defenders. These things produce feelings in me that I just don't have room in my body to feel right about now.

I suppose garbage is a bad analogy here. I can at least throw garbage in a bag, and then take it outside at an appropriate time.

Perhaps it might be possible to locate a quarter or two on the kitchen floor, instead of a corn kernel from 2014. That's almost what happened to me a few weeks ago.  Last summer, I had an encounter with another mom in a hospital waiting room. My son, Branko, had broken his femur the previous week, and we were there to replace the cast. If you are at all interested, please read the rest of the story here.

Let me get everyone up to speed: Frazzled Mom (me) goes into waiting room with son + newborn daughter. Is having a shitty time dealing with things. Other Mom is nice and has nice kids and makes everything okay. Gives Frazzled Mom a business card for her blog; has a sweet contest going on at the moment for baby gear.

I would be lying if I said that the thought of free baby gear didn't peak my interest. At some point last year, I started sincerely believing that because we had experienced so many terrible moments of sheer unluckiness, that the rest of the world somehow owed me something. I was absolutely certain that it was my destiny to win the lottery very soon. This could be it! Random baby gear that I may never use might potentially represent the turning point of my life. Yes, mother in the hospital waiting room, I WILL check out your blog. And win your darn contest, too.

The thing is, I'm terrible at doing things. I had it all planned out in my head: I would go home, dig the business card out of my jeans, craft an amazing "thank you for being nice" email, send the email, enter the contest, and cook an amazing dinner for my family.

I am pretty sure what actually happened resembled the end of Reservoir Dogs, without guns and the suits. Branko was loud, hot, and in pain and I had to decide on giving him either tylenol, morphine, or both. I was unsure, so I spent 35 minutes on hold waiting for a doctor. My daughter vomited on my pants, so in the washing machine they went, along with the business card. What was I thinking? I was trying to do my best impersonation of a particularly thoughtful type of person who sends thank-you-emails to complete strangers. I was also trying to pretend to be a contest enterer. I had failed miserably on both accounts.

In conclusion, I never emailed her that day. Even though I had washed the business card, I came across her blog's Facebook page about a month later. I added the thank-you-email to my mental to-do list, and didn't think about it again until over six months later, when I decided to take up The Mighty on their February writing challenge. This one involved thanking someone who had displayed kindness, no matter how subtle the action. I wrote about what happened - quickly, because remember, I'm terrible at doing things - and within a couple of hours they had published it. Nice!


I decided to send a quick email to the the other mom. I shared the published link and was like, oh no big deal but this is about you and your kids. It was only after I had sent the email when I realized how completely weird the whole thing was. Would she think I was a creep? Would she be pissed off that I didn't contact her directly? Would she even remember me?

Well, everything pretty much worked out in the end. She crafted a really well-written response and published it on her blog. You can read it here. Or not. I don't care. But you really should. More importantly, this is a great example of how good things can happen, even if you suffer from extreme procrastination and laziness.

I am certain I will be Frazzled Mom once again in the hospital waiting room. I know that there will be moments when both my kids need me and I just won't be able to do two things at once. I know that my daughter will probably one day complain about having to tag along with her brother to the hospital, and she will probably (definitely) ask what's up with his legs. But I also know that another mom, any mom, will have my back. And that feels pretty great.

Tuesday, January 27

BLOOM!

Oh hello. I am in the middle of a sleep deprivation nightmare. Soon to be resolved by a visit to the pediatrician, I hope. I am about to abandon all attempts at creating paragraphs. As I have very important stuff to say, I'm going to switch to point-form now:

1) There exists a wonderful children's rehabilitation hospital in Toronto called Holland-Bloorview.

2) If you are connected to the Holland-Bloorview world, you get to read a magazine called BLOOM. (It's delivered to your door and everything)

3) The BLOOM magazine also has a great website and blog, with resources for special-needs families. You should check it out here.

4)  I wrote a little ditty about our winter quarantine for the blog:

http://bloom-parentingkidswithdisabilities.blogspot.ca/2015/01/why-your-kids-sniffles-make-me-sweat.html

5) I am going to bed now.




To the Mom in the Hospital Waiting Room

Dear Mom Waiting at the Orthopedics Clinic with her Kids,

It was a hot day. And heat means it's going to be a rough day for my son, Branko.  Summertime breathing was a gruelling task due to all the fluid junk in his chest. I showed up in the waiting room, scanning the area for a wall socket that I could plug his portable oxygen concentrator (POC) into. You kindly moved over so I could have a closer seat. I'm going to be honest: sometimes people, even parents of sick kids, don't move over. Thanks for that.

Branko looked terrible that day. In addition to having an oxygen tube and a roaring POC beside him that you never quite get used to the sound of, he had a broken femur. He had broken it the previous week, about a month after his sister was born. We were there to take the soft, temporary cast off, and replace it with a fibreglass one. You didn't notice my daughter at first - she was so tiny back then - and I had tucked her in nice and cozy in the bottom half of our brutally giant double stroller. I may have even run over your foot. Sorry for that.


You didn't flinch at the sight of Branko. Your two kids - a boy and a girl - didn't flinch. I immediately sensed that you didn't feel sorry for us, and I liked that. We started to chat and you explained that your four-year old daughter had broken her elbow a few weeks ago. This was a follow-up appointment to see if the break had healed. Today might be that special day the cast comes off! (spoiler alert: she needed it for a couple more weeks)

As soon as we mentioned the word 'cast', Branko had a meltdown. You see, this was to be Branko's sixth cast. Six. Putting a cast on is terrible. He usually has a panic attack, and it takes at least two people to hold him down. But I was there alone that day, and I was panicked about having to do it all by myself. (As an aside, I did do it. And I rocked.) Both you and your daughter tried to calm Branko down by asking what colour he wanted this new cast to be. It didn't work, but it kept my mind calm for a few moments.

Your daughter's name was called. You wished me luck, and I remember thinking about how nice you and your kids were. But nothing prepared me for what happened 20 minutes later. You had sent your daughter back into the waiting room, to show off her fabulous new purple cast! She went right up to Branko and said, "it doesn't hurt, and I got to pick the colour." I remember thinking I might never get a chance to thank you, to tell you how awesome you and your kids are. If your goal is to raise kind and sensitive children, then feel free to keep up the good work.




Thursday, January 1

My (Partial) Year In Review

I just watched my 'Year In Review' video on Facebook.  I saw the beginnings of eggplant parmesan, which my husband makes for me every time I am significantly passed my due date. I saw the first photo of my beautiful, angry, piglet daughter, born in April. I saw our son recovering from anesthesia after a straightforward, successful, dreamy surgery, in which everything went better than expected.

But there were other events - bad things - that were absent from my video. And this was weird. I haven't been secretive. I have been faithfully using Facebook to keep people up to date, although sometimes with more aloofness than I'd prefer, with what's happening in our lives. Branko, our son, spent most of last year's winter in the hospital for various respiratory infections. Whenever we were discharged, there was hope. We would ooze hope. It felt so wonderful to be allowed to go home. Branko would eat better. He would sleep better, too. I may have even allowed myself to believe I could make him better all by myself, through the power of kale smoothies and chest physiotherapy.  And then, like clockwork, we would need to bring him back to the ER, wearing our patented incredulous smiles as they told us he would be admitted to the ICU. Again.

These winter months culminated in a month-long hospital stay in April. He was very sick, but this time there was no virus. I made them re-swab every orifice on his body, clinging to the fact that if they just found the pesky microbe making him sick, we could fight it and go home. But it wasn't that kind of hospital stay.

Branko's lungs had stopped working properly. In medical terms, it's called 'Respiratory Failure'. We had to quadruple the amount of oxygen he was receiving. That alone shook me. He was young. He was supposed to be requiring less oxygen as he grew. And here I was, sprinting to his oxygen tank and cranking it every time he became upset, or grew pale, or simply told me he wanted 'more oxygen'.

His doctors stopped looking me in the eye. That's when I knew things were bad. They asked to speak with us alone, in a room with extremely uncomfortable chairs. The doctor quickly told us our son had less than two years to live. I still remember exactly how the room felt at that moment: Prickles and clouds, and why is there no air in here? The lights were bright, so I put my head down and clung to my 39-week-sized stomach. But what about CPAP, or BiPAP, or even a tracheostomy? What about his monthly bone treatment? What about growth hormone injections? I just kept spewing everything I had ever absorbed from Grey's Anatomy. The doctor was firm in her belief that while these were all potentially good treatment options, she simply thought none of them would work. Branko's situation was too advanced, too complex. She finished with, 'enjoy the time you have left.' In those five minutes, this doctor took all of our hope, our plans, our lives, and threw it in the trash. I think we left the room right after that.

If I could write a letter to the powers-that-be at Facebook, it would probably go something like this:

To Whom It May Concern: Thanks for jazzing up my year-in-review video. Thanks for letting me feel like I was a normal, regular, ordinary person for about 30 seconds. This past year (as you guys already know, of course) was kind of the worst. I really didn't know what to do with myself for most of it, except for think about what I would do differently if I could go back to that really uncomfortable chair. I know that my hope was very easily erased by one person's opinion. I wish I could give my April-2014-self a big fat head squeeze. I wish I could tell myself that it's perfectly sane, perfectly alright, to be hopeful. To truly believe that the really bad thing you fear most will just simply not happen to you.

Or something like that.

I won't go into the minutiae of our medical journey since then. All we really need to know is that Branko's breathing has improved since he started using a BiPAP machine at night. It really is a marvel of modern science. I sometimes clean it with a soft cloth, and in these moments I know exactly how car enthusiasts feel. He is getting better, and more importantly, I finally have hope.

I've decided to stop asking everyone in my life, especially doctors, to predict the future.  I'm finally more concerned with right now rather than a week from now. Branko is a lottery winner and a science experiment rolled into one complicated package. He's a one of a kind, one in a billion kid. This mystery won't be solved any time soon.