I’ll never forget one of the hardest days in my life. Matthew was 7 months old and we knew he had some major issues, but really had no idea what was wrong. He had suffered major oxygen deprivation and when he was 1 day old, he started having whole body tremors. They were the scariest thing. They lasted 4 months and I spent the first 4 months of his life sitting on the couch holding him, which was the only thing that seemed to calm down his little body. That day in the follow-up clinic was one I will never forget. Our worst nightmare came true, Matthew was diagnosed with hypotonic cerebral palsy. I was devastated beyond words and sobbed like a baby in front of all the staff (which is so uncharacteristic of me). As the months passed, every fear I had for Matthew came true. He was diagnosed with a vision impairment that is neurological, called Cortical Visual Impairment (CVI). The pathways in his brain that tell him what he is seeing were destroyed. He was cortically blind. He was also at risk for epilepsy and at 10 months old, he started having seizures. They lasted for 7 months. That first year of his life was one of the hardest in my life.
Fast forward to today. Matthew is the happiest and sweetest 4 year old you could meet. His contagious smile lights up a room. His favourite way to spend time is surrounded by kids and he screams with his whole body in excitement. He loves music, singing and always wears the biggest smile on his face.
All my terrible fears did come true for Matthew, but they do not define him. He has taught us more about unconditional love, patience and appreciating all the wonderful small joys in each day. Matthew uses a walker to walk, has a wheelchair stroller, but his favourite way to get around is rolling and moving himself. He is defying odds. I remember seeing the fear in the eyes of the Doctors when he was born, but with a ton of early intervention and surrounding Matthew with tons of love, he is progressing every day.
He has been seizure free for many years. He is learning to see more everyday thanks to the great help from the Blind Low Vision Program and is using his vision now purposefully. That is the positive thing about a brain injury, the brain can create new pathways and we have no idea what the possibilities can be.
Matthew does regular physiotherapy with Early Intervention Services and can ride an adapted bike and walk in his walker. When he was young, he had virtually no tone in his body at all and could not even hold his head up.
Matthew repeats words and sings along with songs. He tries talking and wants to be a part of every conversation. He is starting to use augmentative communication to communicate. And he is able to communicate to us in his own ways.
It has definitely been a challenging few years, but by prioritizing goals and ensuring there is regular communication between therapists, we have a better handle on when to work on what goals with Matthew. Matthew attends a Special Needs Preschool and will attend JK in September.
One of the most important lessons I have learnt, is just to have fun with your child. They are a child first and foremost and having fun as a family and just hanging out can be the best therapy of all.
– Matthew’s Mom, Stephanie