I Lost My Son Six Months Ago — A Beautiful Boy Who Shaped Who I Am
By Rae Martens
Photo © photomasha_symchych/Twenty20
Mar 29, 2021
Fourteen years ago, I remember taking my son home from the NICU.
He was examining the world from the vantage point of his car seat, on the floor a few feet away from me.
I just stared at this little stranger for a moment, wondering how my life was going to look down the road. How we connect with these little human beings with such an intensity is a feeling that lacks description and even now I struggle to find the words. I think that intense connection becomes a whole lot stronger when you know it takes some work for some little ones to make an entrance into the world.
For a 36-weeker, my son Luke was born at a whopping three pounds and seven ounces. He had a shockingly non-dramatic stay, despite the fact that it was very apparent there was a unique diagnosis waiting to be determined. It took us six months to get answers from genetics, which by standards of rare disease was actually a very short period of time.
Christa Couture is a loss mom, something she's found difficult to navigate at times. Here's her story.
As a mom, the wait was agonizing. Our geneticist would later remark, “Chances are you’re going to know more about this diagnosis than me at the end of the day.”
Then the diagnosis revealed itself: Mosaic trisomy 22, which is an extra copy of your 22nd chromosome and is attributed to growth. From scientific literature, the estimated incident rate of being born with it is somewhere between 1 in 30,000 to 50,000. What would his future hold? We just didn’t know enough to say, but chances were high that it would be entirely up to his physiology.
Sadly, there’s no luxury of a crystal ball here. Be it long or short, we were determined to make his life a good one.
The Healthcare Waltz
Dr. Victor Montori once referred to the healthcare relationship as a sort of intimate dance when it’s done well. I feel that my son Luke was born at a time of transition in how healthcare envisioned “family-centered care,” because for me it often didn’t feel like a dance.
Sometimes it felt like I was being dragged across the dance floor, confused and completely without guidance. It sometimes felt like people assumed that I knew the dance steps, or that someone else would determine the steps for me without giving me a say at all.
We all have our definitions of what parenthood should look like. I joined an elite club of families that that are not only tasked with giving their beautiful kids full lives, but to challenge a system that at times isn’t welcoming to them. I did not feel gifted to tackle these necessary tasks, and at times I failed miserably, but “adapt” became my middle name. This elite club became a lifeline for resources, strength and kinship when others walked away.
The way the world currently supports disabled children seems, at times, to be a misuse of the word “resilience”. Somehow because you’re this "superhero” parent, it felt like many believed I could just call on more strength to endure gaps in a variety of systems – be it health, education and whatnot. As I see it, the result of all this added pressure greatly affects the overall health of parents, because they are chronically stressed.
I tackled barriers with a few personal rules set in place:
- Walk away from any project at a moment’s notice, should my son’s health deteriorate.
- Account for my own mental health status or personal health.
- Stay in honest communication with my spouse to ensure his own health isn’t impacted in the process.
- Make sure something is worth my time. Time away is a sacrifice and lost opportunity for making memories as a family.
These were not easy standards to live by, and I had to make peace with knowing some opportunities had to be left unattended.
This is what we do as parents though: we’re tasked with building a better world for our kids. We see this giant canvas that’s meant to be a mural. We are given only a small handful of tools, and yet our inner messaging often tells us, “It is my job to paint the whole thing!"
But it can be impossible to do everything yourself, which is how I found solace in a collaborative community.
That way, I focused on my contributions to the tapestry. Then I brought others in, in the hopes that one day it would be full.
Sabrina Boileau is a young mother who experienced a miscarriage, a loss she intends to grieve for however long she needs. Read about that here.
A Second Home
It's this community where I found a home. I found a space in patient-oriented research, where lived experience lends strength and real-life applicability to science, meant to support disabled kids like my son.
It’s in this community that I found talents that I never knew I had, and an interest in disability rights policy for kids in Canada. I had the honor of participating in important conversations at the United Nations twice.
February marked six months since my son passed away, and coping with his loss is a work in progress. The day he passed away my husband took a moment and reminded me, “we did good.” I want that feeling for other parents walking similar paths to mine, that feeling they did right by their kids.
Who I am moving forward is something that I don’t have an answer for, and that’s a process I’m trying not to agonize over right now. All I know is I can’t deny the impact my son had on my life. He shaped who I am now. For now I’m just working on my part of the mural.
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