Here’s the first kind of mom I was: a nervous—but thrilled—first-timer. When my oldest son, Ty, was born with the help of IVF 14 years ago, I worried about everything, as you do with your first, but I was so, so happy to be a mom. I couldn’t get enough of him. We travelled to the Caribbean, we rented a cottage and we took him everywhere, singing him songs all the time.
Then I got pregnant with my twin boys four years later and, again, I was utterly delighted, and again I was worried. We had undergone in vitro fertilization again, which adds a heightened anxiety to any pregnancy: I wanted these babies so desperately, and we had cleared out our savings to conceive them. If something went wrong, trying again just wasn’t an option.
Jayden was born gorgeous and healthy. Moments later, they placed Zack on my chest and I saw his face for the first time, so different from his brother’s. With my feet still in stirrups, the doctor started using phrases like “dysmorphic facial features.” Then my baby started to turn blue and they whisked him away. My abstract worries became true fear, and I instantly became a different type of mom: one of a child with special needs. Zack was diagnosed with a congenital heart defect that required open heart surgery on his tiny body while I breastfed his brother in the waiting room. He had several other anomalies, too, including hearing loss, seizures and respiratory problems.
Dreams of visits to creeks were replaced by visits to specialists. Playgrounds were replaced by living room pillow forts. Places like museums had to be avoided: Germs were terrifying, as even the slightest infection could prove to be fatal for Zack. Forget things like trampolines—anything rambunctious had to be tamped down. Zack also had a G-tube, which meant minimizing his movements so that it wouldn’t be accidentally pulled out. Precautions for Zack meant being overly cautious with Jayden and Ty, too. Our daily life couldn’t be about adventure and exploration; we all just had to lay low to keep Zack safe. We had to stay sheltered.
But we had a life of so much beauty, too. I dressed my twins in matching outfits all the time, even though they were three sizes apart, and all of our play was adapted so that Zack could take part. We would drag him down the hallways in an empty box while he screamed with laughter. We would place him in a bath seat in an inflatable pool in the backyard while he watched his brothers being silly. The neighbourhood kids adored him, taking care of him and making him laugh. And the joy everyone feels when a child with special needs accomplishes something new is unlike anything else. We took a video of the first time Zack ate an apple—solid foods were a sensory challenge for him—to whoops of delight from his proud brothers.
Then, seven years ago, Zack passed away in our arms after contracting pneumonia and the influenza B virus. He was three years old. That’s when I became yet another type of mother: one who lost a child.
On one hand, our family was able to discover a bit of freedom. After years of staying indoors, close to home, and spending days and weeks at clinics and hospitals, we were able to explore a bit more. We had an opportunity to make up for lost time. Until that point, their childhood had been spent indoors, hunkered down in the hospital. My husband, Paul, and I decided to let them lead for a while.
The summer after Zack died, we went on a road trip through the United States. We went to Cooperstown, New York, to water parks and museums. Zack was with us every step of that trip. We all blew bubbles, which he adored, at every stop. We visited Sesame Place to meet Elmo and showed him a photo of Zack, his biggest fan.
But, of course, on the other hand, we were grieving deeply. Paul and I joined a bereavement group, and the boys shuffled off to what they glumly called “Dying Class,” where they were with other kids who had experienced loss. We all struggled through as best we could. (I found fundraising for other families really healing.) It took a couple of years for it to really hit Jayden, which was actually a bit of a gift. It meant that, when he was at his lowest points—having meltdowns at school, coming home and saying that he’d seen Zack in the classroom, asking us over and over “Why did he have to die?”—we were better able to help him. We had already been through the worst of it.
But now, seven years after our loss, I still feel the ripples. Sure, I’d love to be the free-range mom who sends her kids out to splash in a creek, only to reappear hours later, tired and happy. I still have a bit of a residual fear of germs. I still worry about my kids all the time. I still struggle with letting my boys explore the world—I was the last of the moms in our neighbourhood to allow Jayden to walk to the corner store on his own (and I spent the ensuing 20 minutes with knots in my stomach). But I’m getting there.
Parenting is always about the push and pull—about giving your kids the freedom to live while ensuring their safety—but it’s even trickier when you’ve lost a child. When you’ve lost a child, it completely changes you, and it changes how you parent your other kids. You are more cautious. Your kids have astounding needs related to the loss that require your attention, patience and advocacy. You are plagued with guilt. You are making up for lost time. You’re always thinking, I just don’t know what I would do if I lost another child.
So, yes, I am considered an overprotective parent. But there is just so much I couldn’t protect my boys from experiencing—the pain, fear and grief of loss—and I hate that they had to go through that. But every day, I am grateful for Zack and the lessons he left behind. We have all been gifted with a profound understanding of empathy and a deep understanding of differences. Every day, we experience the importance of volunteering and giving back to our communities. It’s a real testament to my beautiful son’s legacy.
Today, the boys are both doing wonderfully. Ty takes after me, his cautious, overthinking mom (which is actually not a bad trait in a teenage boy!). But he is thriving in high school and becoming more independent every day. Jayden is getting the help he needs for his ADHD (grief and ADHD present very similarly in kids, so it took a long time and a lot of advocacy to get him the diagnosis and support he needed). This summer, after years of pleading, he is going off to sleepover camp for the first time (and I am trying to be cool about it). I am now working for a community organization, mentoring families going through what we did and connecting them to the right support. Instead of having to hide our experience, I get to talk about it—and Zack—a lot.
You never know what someone you deem overprotective has gone through. For a family who has been through trauma and loss, what may look like a tiny movement can actually feel like a massive leap. We take steps every day, just maybe a little more cautiously than other families.
And Zack is still everywhere in our home and in our hearts. We fundraise for SickKids as a family every year. His photos are on the wall. His handprints and baby books are on the shelf. His crib was made into a headboard for Jayden. We talk about him all the time. We cry when we miss him. We laugh when we see bubbles. But we’ll always be a family of five with a crucial missing piece.
This story is a part of Let Them Play, a project examining kids and independence by Maclean’s and Today’s Parent.