Now or Never49:35Need Summer? Listen to this.
This First Person column is written by Morgan Klachefsky, who lives in Winnipeg. For more information about CBC’s First Person stories, please see the FAQ.
When my son Simon was just 18 months old, I gave him a cashew without thinking anything of it. Less than an hour later, we were running behind a nurse through the full waiting room at the Winnipeg HSC Children’s Emergency Department, as Simon’s face swelled.
A doctor came sprinting into the triage room behind us, took one look at Simon and confirmed that our toddler’s throat was closing. Simon was having an anaphylactic reaction. He was later diagnosed with a deadly cashew and pistachio allergy.
We eventually left the hospital but a part of me stayed there forever — the part that was blissfully ignorant that my child could die if he ate the wrong thing, the part that never had to wonder how I would protect him from doing that for the rest of his life.
Wanting control
When I realized there was no way to stop my son’s allergies, I resolved to do everything I could to minimize the chance of him being exposed to the allergens.
I set forth to educate myself and everyone who cared for Simon. His dad, Job, and I even went to classes on how to cope and manage when your child has anaphylactic allergies. However, the more I learned and the more prepared I became, the more I felt overwhelmed. My fear began to control me and prevented me from trusting anyone with Simon’s care besides me and my husband.
I couldn’t imagine sending him for a play date or a birthday party without us, let alone a sleepover. If he was invited to a play date, we would offer to hold it at our house. At birthday parties, we stuck around. Sleepovers we just hoped we could avoid.
Coping mechanisms
As Simon grows into a brave and confident kid who loves life with more zest than I have ever seen, his courageousness has slowly started rubbing off on me. He gave me the confidence to seek a solution — not for his allergies, which we eventually learned he would never outgrow — but for my mental health.
The more my mental health declined, I knew I had to make a change. I wanted to be the mom Simon deserved: someone who was present and living in the moment, not paralyzed by the worry of tomorrow or stuck in remorse and regret of yesterday. As I dedicated myself to improving my mental well-being, I realized that my fear was running the show, and my controlling behaviour was not helping anyone.
I realized that fear was running the show, and my controlling behaviour was not helping anyone.– Morgan Klachefsky
When he asked to go to his first birthday party or play date without us, I tried not to let fear win. Instead of isolating myself, I let other parents of his best friends in by giving them a little of my trust.
I would go over what he could and couldn’t eat, and how to use an EpiPen before we left. If the parents weren’t sure if the food was safe, they would text me first. Remarkably, Simon’s closest friends have known from a young age about Simon’s allergies and would often ask their parents to read labels and make sure food was safe for Simon.
New research led by McMaster University argues food bans in schools, meant to protect students with allergies, can give a false sense of security and should be relaxed, in favour of educating parents, teachers and students as well as having epinephrine available.
Each time we went through the process of a birthday party or play date and he was safe, my fear lessened and I gained confidence in others. Job was always supportive, telling me that it was time for Simon’s world to expand.
And he was right. Simon’s world is growing and we could join him, or resist it.
It’s hard not to have a God complex when my child came from my body and I was responsible for all the choices in his life when he was little. But I do not run the universe and I do not have a say over what life will bring him. All I can do is be here for him and walk him through all the pitfalls and scary things of life instead of trying desperately to help him avoid those things.
Education and trust
I continue to stay vigilant and now teach Simon how to be vigilant. Now that he is nine, I feel more comfortable giving him more responsibility. He can read labels on his own and knows how to give himself an EpiPen properly.
I have already told him that one day he is going to kiss someone, and he is going to have to ask if they have eaten cashews or pistachios that day.
I tell him stories about teenagers who left their EpiPens at home or felt peer pressure to eat something they weren’t sure about because they didn’t want to feel different, and the heartbreaking consequences it had for them and their families.
But I also point out all the people who have worked together to keep him safe and why he will now have to carry that torch.
Sleepaway camp
This past summer, Simon asked to go to sleepaway camp for five days. It was the first time he had been away from us in his life other than the occasional sleepover. He and his uncle, the camp director, had pressured me the year before and I said no because I wasn’t ready. This year, I finally relented.
As his departure day grew closer, I kept asking his dad how we were going to do this. To send him off as a then eight-year-old with a deadly allergy without us for a whole week under some camp counsellors’ care seemed impossible to me.
But Simon was going with his three best friends who have always made sure Simon was safe in their homes. His uncle was in charge of the safety protocols of the camp, including the no-nut policy. Simon is now aware and clear on what he can and can’t eat, and who to ask if he doesn’t know. It felt like a leap of trust but I put my faith in Simon, and in others, to keep him safe.
Saying goodbye felt like a huge first step in what I know will be many future goodbyes. If I waited until I was ready, I would never be ready. With the backing of all the people who love him, we sent him off excited for his new adventures and terrified at the same time. We let him go.
A week later we picked up a tired, dirty kid who had experienced the time of his life. He was happy to be home and asked to go back to camp for two weeks next year.
I won’t be ready for two weeks away from him, but I will let him go. Each time we let go of each other, we gain strength and courage for the next step that life will bring. We stay vigilant, we ask for help and we don’t let fear win.
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