He was only three months old. Our second child. Born in Saguenay–Lac-Saint-Jean. To get to Montreal from there, it takes five hours – which is something you do, breathlessly, on your way to a flight to an all-inclusive resort in Mexico. It almost seems like it’s on the other side of the world. It’s also a place you instinctively head to when you’re worried about your child’s health, and you have doubts about the diagnosis you just got from local medical professionals.
“Those little twitches of his are peculiar, but it’s probably just gastroesophageal reflux. When he bends forward like that, it may be a sign that he’s experiencing some sort of pain, but it doesn’t strike me as severe. You can go see your family doctor next week, just to be sure everything is all right.”
Everybody we knew tried to reassure us. But that evening, my wife and I decided to head to Sainte-Justine, completely unaware of just how much the hospital and the professionals who work there would become our pillars of strength.
A swift verdict
The ER was crowded. Coughs, runny noses, whimpers, wails. Fretting parents running their fingers through their child’s hair, hoping to be sent home quickly with an elixir that would have their little bundle of joy back in the pink in no time.
We showed the triage nurse the videos of the strange twitches our little Éli-Noam was making.
To our surprise, she didn’t send us whisk us back to the main waiting room. She put us on the “priority” list.
And it wasn’t because we drove in all the way from Lac-Saint-Jean. Or because we were particularly pleasant to deal with.
Thirty minutes later, we were in one of the exam rooms. That’s where the ER doctor delivered the news that sent us reeling: “It’s pretty clear what I’m seeing here. Your son is having infantile spasms. It’s a type of infant epilepsy that’s particularly aggressive and hard to treat. We definitely have to admit you. We’ll run a series of tests to determine whether there are any anomalies in his brain and to get him started on a course of medication. But you’re in the best place you could be right now. You made the right decision to come here.”
BANG. The earth stopped turning and our world came crumbling down, all at once.
Cultivating love
As a parent, you are never prepared to hear there is something wrong with your child. I didn’t have the tools to process the news. Neither did my wife. And yet today, six years later, when I look at Éli-Noam and I step back to see the big picture of how our family is getting along, I have to say I’m extremely proud of how far we have come.
From that day onward, we experienced countless highs and lows (some very low indeed), but we worked hard to get our world turning again, by making what we thought were the best possible decisions and by surrounding ourselves with the right people.
Statistics show that more than 80% of couples break up after their child is diagnosed with a serious illness. A social worker told us this the first time Éli-Noam was admitted to Sainte-Justine. That’s when my wife and I decided that, no matter what happened, we would do everything in our power to be one of the precious few in the 20%.
I’m proud that we’re still going strong, that Éli-Noam is still alive and that his big brother is living his life to the fullest and hasn’t been overshadowed by our many – and long – stays at Sainte-Justine.
I’m proud to say that, despite the black clouds that once stretched across our sky and that continue to pop up on the horizon from time to time, our family’s garden is growing with love – love that we have carefully tended over the years and harvest every single morning.
The power of a team
The reason we are still standing is in part because of the strength and inspiration that the staff at Sainte-Justine gave us from day one.
Every time we checked into the ER, we went in for a follow-up appointment or we were admitted to the hospital because his epilepsy was out of control or because the drugs he was taking were ravaging his little body, there were wonderful human beings there to support us and work with us, so that Éli-Noam could get better and we could hold down the fort.
Marika, Manue, Jo, Aurélie, Hélène, Virginie, Stéphane, Charbel…
And, of course, Pauline, the kind of orderly anybody would love to have as a grandmother, who would bring in Tupperware containers full of homemade sucre à la crème!
And all those volunteers and friends who took over for a while when we needed a break, so we could keep our heads above water.
And, yet, at times, it was all too much for us. More than once, we thought Éli-Noam’s time was up (his isn’t a simple case of epilepsy – he also has kidney and respiratory problems, a severe allergy to dairy proteins, an under-functioning immune system and other issues).
Despite the complexities involved, we always felt like we, as his parents, were part of his team of caregivers. This philosophy had a major impact on us.
If someone had told me that, one day, I’d have a child hooked up to an oxygen tank and a feeding apparatus while I was taking notes on his seizures on a beach in the middle of July, I’m sure I would’ve said I was physically and mentally incapable of anything of the sort.
But somehow my wife and I have found the strength to be there for our little superhero. I guess it’s safe to say we have a bad case of the “love bug”!
And today…
We’ve tried a dozen anti-epileptic drugs, as well as medicinal cannabis, but his seizures unfortunately remain part of our everyday lives. A few months ago, Éli-Noam had a vagus nerve stimulator put in – a device used only in specific cases of drug-resistant epilepsy to deliver better seizure control over the medium and long term.
In addition to various specific health concerns that were recently confirmed as being linked to an extremely rare genetic mutation, our son has also been diagnosed with an intellectual disability. That is why he has just enrolled in a special school, which he can attend until he’s 21, and benefit from the support of a whole team of specialists.
Éli-Noam’s health problems turned our lives upside down. We eventually left our home in Saguenay–Lac-Saint-Jean to move closer to Sainte-Justine.
We found ourselves in completely unknown territory, and we decided to leave everything behind to make a new start.
Yes, his condition was a factor in the move, but we didn’t make this decision for that reason alone. We did it because of the love that holds us together as a family.
It’s a love that has lifted our spirits and given us the strength to carry on.
A love that – despite all the surprises, fears, worries and moments of despair and disbelief –endures and grows.
Every day.
Jean-François Quessy is the blogger behind Un gars un père. You can read Jean-François Quessy on his blog and follow him on social media.
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.
