I’ll admit I never gave much thought to the meaning of the word “resilience.” I’ll admit I like for things to be nice, tidy and planned out, both at work and at home. I’ll admit I never imagined myself to be a mother who would need Sainte-Justine to such an extent. And I’ll admit I always thought these kinds of things happened to other people. This is our story, and I’d like to share it with you.

My thoughts often wander back to September 10, 2020. Your dad and I were so excited to finally meet you, our sweet little baby. You didn’t have a name yet. We wanted to see your face first for inspiration. And just like that, it hit us: you looked like a Romain. I’ve heard it said that a name can shape a child’s personality. Well, in your case, it may very well be true because you definitely turned out to be as strong and as fearless as a Roman warrior.

You were a mere seven days old when the diagnosis came in. You were born with severe scaphocephaly, a rare condition that affects about one out of 2,500 children. A suture in your skull had fused too fast and too early, which meant a high risk of intercranial hypertension. We were told you would have to undergo surgery in the next little while to ensure a brighter future ahead. They said they would be cutting into your skull, with an incision running from ear to ear.

Romain operation
Romain 3
Romain 2

A deep, dark void descended upon me, and I couldn’t stop thinking, “Why us?” You were too tiny and too vulnerable for something this serious and thus sudden.

I had no control over anything at that point. We had to rely completely and utterly on Sainte-Justine. The fight to give your brain all the space it needed to grow and flourish was on, while the pandemic raged all around us.

One appointment after another would follow: neurosurgery, blood work, scans, ultrasounds, ENT, ophthalmology. And like the warrior you are, you were already doing battle, a quiet force standing your ground. With a courage and grace that helped me stay strong, too.

Romain frere facetime
Romain maman
Romain frere 2
Romain 4

On January 28, when you were just this side of four months old and the entire province was on lockdown, you underwent the procedure that would change your life. I remember that day so clearly. The COVID-19 protocols in place meant that only one of us could be there before the operation. I have an all-too-vivid recollection of the moment they gently took you out of my arms to put you under. My heart broke into a million pieces as I watched you be wheeled away in that little hospital bed. It’s impossible to describe just how powerless and petrified I felt. The next seven hours were absolutely unbearable for our entire family, your father most of all, who couldn’t even be there because of the restrictions.

Then… I can still hear the surgeons’ words after the operation: “It went well. Your little Romain will grow up to be healthy and strong.” What a relief! I can’t even begin to put the emotions that ran through my head into words, even today.

Romain 1

The fight wasn’t over, though. Your recovery was intense: a blood transfusion, major brain swelling and morphine to control the pain. But you never ceased to amaze me. And by the time we returned home, we were told you’d be able to live life without any limitations, although we would have to take you back to Sainte-Justine for regular checkups.

The worst was behind us at that point, but the accumulated fatigue and the sense of isolation and anxiety of those first few months eventually got the best of me. The aftershocks left me feeling fragile and vulnerable. I knew I had to process the loss of those first few months that did not go as we hoped and planned. The hardest thing for any mother to do when faced with circumstances like these is to accept the way things are and put aside the guilt that comes with the territory. I am getting there, slowly, with the help and love of our family and friends.

Romain casque

I am sharing our story, Romain, to say thank you to all the angels who took such good care of you and our whole family, from the second we walked through those great big doors at Sainte-Justine. They gave us the support we needed so desperately to overcome the doubt and uncertainty. A special thank you goes out to Stéphanie, Marie, Dr. Venne and Dr. Roy.

It isn’t the worst storm to ever hit a family, but it was certainly enough to shake me to the core. No newborn should start their life like that, but when it does happen, having something solid to hang onto and trust makes all the difference. Your story has touched the hearts of everyone around us and always will.

Sainte-Justine took us by the hand and helped make us more resilient. We got through this ordeal with them by our sides.

Romain aujourdhui

You will be celebrating your first birthday on September 10. Our worries and fears are behind us and we are living in the moment, which is the most important thing right now. The inconspicuous scar running down your scalp is your own personal badge of strength and courage. And for me, it symbolizes my eternal gratitude to Sainte-Justine. The reason I am sharing our story, Romain, is to encourage people to give generously to the Foundation: they were the ones who soothed our troubled spirits in our darkest moments. So I am reaching out to you now to take a minute to send your donation and your message of hope right now. Your support means the world to families like ours, which is why we are doing our part to appeal to the people in our own circle to make a contribution through our fundraising page.

Thank you, my love, for being strong. I know this has all been just as painful for you. Thank you for taking care of Damien, who was so worried about his little brother. I don’t know what I would’ve done without you there.

And thank you, Romain. Now that the storm has passed, it is dawning on us that our differences are what make us special and that love is rooted in the smallest of things, the most fleeting of moments and the most incredible of people. Now go out there and shine, my son. Your life is yours for the living.

And best of luck to all the babies and families out there as they weather their own storm.

I love you, Romain. And we are so very proud of you.

Mom, Dad and your big brother, “Dada”

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*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.