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.