It was a sunny Friday in fall. The green leaves on the trees were threatening to change colour, although, once again this year, they did not seem to be in any kind of a hurry. I stroked my smooth, round belly for the last time, daydreaming about not only your imminent arrival, but also my first look at your face. I knew it would be different. Like me, you would be born with facial features that were distinctive, asymmetrical and intriguing. Like me, you would carry the telltale markers of Treacher Collins syndrome. 

The ultrasound tests indicated that these anomalies were mild to moderate. I had already tried to picture what you looked like, swimming in my womb. I visualized how your cellular structure was being built. Would you have ears? Eyelids? Would you be able to hear? How extensive were the genetic defects I had passed on to you? I had spent nine months thinking about every last detail of your appearance. Thirty-eight weeks telling myself that none of these features would bother me. After all, it was something we shared. Who was I to judge?

Joannie Enceinte
© Émie Roussel-Carbonneau

And then you made your entrance into the world, through a cut in my belly. My arms ached to hold you. I lay there, waiting to a hear a cry that didn’t come. The silence was cold and terrifying. Time stood still. It was the exact opposite of what I was expecting from this much-anticipated delivery, this eagerly awaited first meeting. 

The first person to cradle you was actually Émilie, our wonderful nurse. I didn’t know it then, but while I was still woozy from the sedatives, a veritable army had been mobilized in the adjoining room to help give you the gift of your first breath.  

About six hours lapsed between when you were born and when we finally met for the first time. I had become a mother, but deep inside, it felt like nothing had changed, even though the fresh scar below my stomach clearly indicated otherwise. I gazed at you, so small and fragile, in your glass cradle. 

Lea Rose Incubateur

I wanted to hold you close to me, smell you, feel the unique connection between mother and child. But I couldn’t. The umbilical cord that was once our special bond had been replaced by wires, tubes and electrodes. A sign at the top of your bed read “critical intubation.” 

As the gravity of the situation began to dawn on me, it was like my womb was being hollowed out from the inside, an abandoned shelter. I didn’t know anything about motherhood, but I realized that my experience would be unique – something that none of the pregnancy books or childbirth classes covered. 

The adventure had just begun, but I had already started grieving for things I would miss out on. I mourned the “normal” baby and the idealized form of motherhood I would never experience. Then the guilt started to creep in. That bitterness tainted my first moments with you. 

The guilt of giving you the worst of myself, this defective gene, despite being aware of the risk. The guilt of saddling my husband with a little girl with special needs. And the guilt of being the first to scrutinize every millimetre of your tiny face. I was in indescribable pain. I had not been prepared to be so vulnerable. 

That’s when doubt reared its ugly head. Was it selfish of me to want to be a mother in the first place? Should I have not gone through with it? Suddenly, my mind raced ahead – much too far ahead – to the future and what it might hold.

With a heavy heart, I imagined going to the park, the first day at school, your first invitations to birthday parties, your first dates. I worried you would get picked on. I was tormented by the thought of how people would look at you. How they would look at us. Would I be able to bear it? 

Lea Rose Sainte Justine
© Myriam Fimbry | ICI Radio-Canada Première

Six months have passed since then, and I have come a long way. You’ve taught me so much. Your smiles don’t lie: you are a profoundly happy baby. A little warrior who never ceases to amaze me, conquering one challenge after another. I’ll never be able to adequately thank the many kind-hearted people at Sainte-Justine, our shelter from the storm, where I slowly and hesitantly assumed the mantle of motherhood in all its complexity and beauty.

Over time, my anxiety and guilt have given way to the joy of getting to know you and watching you grow. I am now a mother, your mother, with a mix of nurse, occupational therapist, physiotherapist and nutritionist thrown in for good measure. 

The extraordinary has become ordinary. Sure, I still have concerns about the future. But can’t the same be said of any mother? I’m optimistic. I have faith in you and your generation. You see differences as strengths. 

Joannie Etrehumain 2
© #etrehumain (eva-photo et Cynthia Harrison) Joannie Etrehumain3 Joannie Etrehumain Joannie Etrehumain 2© photos prises pour #etrehumain (eva-photo et Cynthia Harrison)
Joannie Etrehumain3
Joannie Etrehumain

As for my reaction to the strange looks, I tell myself that you’re like a beautiful rose blooming in the middle of a wheat field. You definitely get noticed at first glance. Seeing you there is surprising. But people are drawn in and appreciate you for what you are.

And I will be there to take your hand, to hold you in my arms when times get tough and to give you the boost you need to get back on track.

Thank you for making me your mother. You are my pride and joy. 

*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.