It was a beautiful, early spring day, and the sun was melting the last of the snow away. Montrealers were reveling in the warmth of the sunshine, as we walked forebodingly to our son’s appointment with his pediatrician. It was a day we will never forget – our world was turned upside down, and nothing would ever be the same.
In May of 2014, our beautiful twin boys, Avi and Eli, came into the world in haste, ten weeks premature. They both required immediate assistance to breathe, and would spend the next 6-plus weeks in the neonatal intensive care unit. It would be two weeks before we could hold our babies in our arms for the first time; time stood still as we anxiously waited for this moment.
Raising a newborn is challenging in the best of circumstances; we quickly discovered that raising twin preemies was going to be extraordinarily difficult. Avi did not sleep through the night until he was eight months old. And after six months, we began to notice that Eli was achieving milestones, like sitting up unassisted, that Avi was not. Then came that sunny spring day when our pediatrician uttered two words that sucked the air out of the room: cerebral palsy.
How could this be? Surely, Avi was just delayed? We told ourselves that maybe it was something transient – it would resolve itself in time! But after three long, sleepless weeks, where we took turns crying inconsolably and comforting one another, a neurologist confirmed the diagnosis. With it went our innocence.
Ultimately, Avi was diagnosed with spastic diplegic cerebral palsy, a motor disability that affects the legs more than the arms. A lifelong, chronic condition caused by a brain hemorrhage usually occurring in utero or at birth, there is no cure. Diagnosed at 11 months, we were considered lucky. Many children in Quebec are only diagnosed after 18 months – and it’s only with a diagnosis that a child can be referred to a rehabilitation centre for early intervention. We were one of the fortunate ones: we were admitted to the MAB-Mackay before Avi was 16 months old.
He was immediately enrolled in their “Early Intervention Program,” which featured a weekly regime of physiotherapy, occupational therapy and speech therapy. At first, Avi could only roll from back to front. He was unable to sit without assistance, to come up to sitting from lying down, to use his hands to grasp anything, or even to speak.
We are so happy to report that almost a year and half later, Avi now crawls, can sit on his own, is able to feed himself, recites from books, and sings from memory. He’s learned to walk with a walker, and has gained fine motor play skills. His progress is real – some would even call it extraordinary. We call it hope.
Recently, the MAB-Mackay added hydro-therapy to his weekly physiotherapy regime. Avi is a “water baby,” and absolutely relishes his time in the pool. The weightless properties of the water help him better master new movement patterns and build functional strength – all in a fun and exciting way.
It takes a village to raise a child, and we are grateful to the entire MAB-Mackay team for being an integral part of that village for our little boy. It takes a special person to work in an environment where children suffer and struggle every day. We are in awe of the entire team. Their optimism, praise for both child and parent, and the knowing looks they share with us that say “I understand; I am here for you; you can count on me” resonate deeply.
The emotional toll we suffer while watching one twin sprint down the hallway, while the other struggles to crawl just a few feet cannot be understated. Each day, a wound is reopened, and the pain is as fresh as it was when Avi was first diagnosed.
What stands out most about our experience with the MAB-Mackay and its entire team is the constant encouragement and support, the contagious warm smiles, and the always kind words. None of this would be possible without you!
Alana and Aren - Proud mom and dad of Avi