Letting in the light

This piece made me tear up, reminding me of what it feels like to give birth to a healthy child while caring for your firstborn with a random genetic condition. It's hard to make room for "normal" parenting with number two, emotionally and practically, but so worth it. Thanks Jennifer! Louise

By Jennifer Philp Zakic

It takes most people a few minutes of conversation before they realize my giant stroller is actually holding two children. My older son, Branko (above left), is always in the front, and he’s the one people tend to stare at. I’m perfectly okay with that, because I would also probably stare at a four-year-old attached to an oxygen tank.

If I’m talking to a stranger, I like to choose a perfect moment to reveal my 11-month-old daughter (right), informing them that there is, in fact, a baby girl tucked away in there. Ta-da! I love pretending that it’s really no big deal, like getting them out of the house safely was just so easy and natural and why would it be any different for me?

Of course, it’s not easy. It’s never easy, but I’ve come to redefine my definition of “easy” over the past year.

When I first discovered I was pregnant with my second child, Nina, life was slightly less complicated. We were aware that Branko had a genetic bone condition, but it hadn't quite manifested itself yet. He had only broken one bone so far. He hadn’t been intubated yet. He hadn’t yet been prescribed supplemental oxygen. We hadn't even accepted “special needs” into our lexicon of medical terms.

At first, I was happy. The pregnancy had a normalizing effect on me. The mammoth amount of energy I used to invest in worrying about Branko—his acute health, his long-term happiness, whether he would eat dinner that night—was quickly diverted into thinking about the new baby. Would she be as funny as he was? Would I be blessed this time around with a sleepy, snuggly, chubby newborn?

As the pregnancy progressed, Branko’s health slowly declined, culminating with a cardiac arrest when I was about five months pregnant.

During the hardest moments, I would forget about Nina. I was so consumed with all the negative thoughts—ones that every parent who has ever spent time in a children’s ICU has conjured. These dark thoughts would quickly fade away for a moment or two whenever I touched my belly. My daughter. I liked that someone was with me at all times.

I worried about the effect this would have on her. I was sleeping very little, eating whenever I remembered, and I would jump about seven feet whenever my phone rang. Once we were out of the ICU, Branko insisted on being held exclusively in one position: his bum on my baby bump, his head on my shoulder. Any attempt to change this position was met with crying, labored breathing, alarms going off, and nurses rushing into the room.

I remember a nurse who casually asked, “He’s not sitting on your baby, is he?” I lied to her, of course, the same way that I would lie to my husband about how much I had eaten that day.

I lied because I had started feeling guilty. I wanted to be pregnant, but I also wanted everything to be perfect, or at least, moderately okay. I was hardly able to take care of myself, and now, I was in the process of squishing a brand new baby's head. I really hoped she was okay, but at that point, I would have done anything to make my sick son feel even the slightest bit better.

In addition to my guilt, there was the pernicious elephant in the room, its presence magnified every time a doctor glanced at my stomach. A handful of people asked if I had genetic testing, and if so, did I get the amnio? Most asked out of concern, a handful asked with the faintest flicker of discernment, an expression that would come and go so quickly I could almost ignore it. I would usually rise to the occasion and offer the explanation that his mutation was “de novo” or spontaneous. As in, very random and not inherited, thank you very much. Can I offer any other non-relevant information on the health of my children?

When I told Branko's pediatrician I was pregnant, I was expecting the same sort of response. She instead provided something unexpected: Lightning doesn't strike twice.

I tossed and turned over this statement for days.

Lightning doesn't strike twice.

I wanted to take comfort in this, and I tried my best, but I couldn’t get over the fact that lightning, or in our case, a random genetic mutation, could absolutely strike twice. In fact, it could strike over 2 trillion times, one for each cell in the human body. Was I an irresponsible, misguided fool for simply believing that I could be one of those other parents, the ones who have babies with arms and legs that move properly, who have lungs that work, who have voices that aren't diminished by their lack of breath? At this point, the word luck wasn’t in our vocabulary any more. It was hard to stay positive.

I wanted so badly for everything to stand still, especially when it became time to think about the future. It was hard to dig out Branko’s old newborn clothing, so I simply chose not to do it. I was like a teenager hiding an assignment in the bottom of my knapsack to temporarily avoid it. I couldn’t even imagine having to leave Branko for a few hours to—you know—actually give birth to this baby.

With the days leading up to Branko’s birth, I tried all the tricks to make him arrive sooner. With Nina, I did all those things, but in reverse. I tried to keep her in there, safe and sound, as long as I possibly could, meticulously avoiding long walks, spicy food, and pineapple. My midwife was getting frustrated. She kept hilariously telling me to “relax,” even offering to induce any time at my request. But that was unnecessary. The labour was short and sweet and to the point, and we arrived back at the house just as Branko was finishing breakfast. He never knew we were gone.

Nina is now almost a year old, and she does not have a squished brain. She makes Branko—and everyone—absolutely and purely happy. I can't believe I was afraid to meet her.

Watching her over this past year has been bittersweet. She’s so incredibly normal; it’s both overwhelming and unfamiliar to me. I try to avoid keeping a mental list of some of the things she can do that Branko still can’t: pull her own socks off, hold a sippy cup with one hand, move from sitting to lying without heavy breathing or floppiness. It’s really hard not to compare, but I’m also thankful that I’m now the type of parent who wants to crack open the champagne whenever my baby throws toys across the room.

I don't believe that Branko came into our world for a reason. I don't believe that we were chosen for him. We aren’t “special,” and for the most part, this disease he has ravaging his body is no gift. It just happened, the way some people get sick and some people just don't. But I believe Nina gave us exactly what we needed during a very sad time. She cries along with him when he gets a needle; she makes him smile when no one else can. I don't say much about Nina, and I don't often brag about her. I like to think of her as that bit of perpetual light in our darkness. I like to think that she somehow provided that warm, comfy seat for Branko on purpose. I think that part was meant to be.

Please follow Jennifer on her blog Branko Has Funny Bones.