Living Outside The Lines

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Growing up as an only child, I knew I always wanted to have a big family; so the news that we were expecting our third child was incredible and we couldn’t have been happier.

Already being a mother to a busy little bunch of munchkins, I felt quite confident in my mothering abilities. My pregnancy was fantastic! The kids were super excited for their new baby brother or sister to arrive and often would talk about what games they’d play or toys they’d share.

When the day arrived for my cesarean, I never in a million years anticipated things would go terribly wrong. Our new baby had suffered serious trauma, causing the loss of blood and oxygen to her brain resulting in massive brain damage.

From the moment of Olivia’s arrival, she fought to hang on. Our daughter was diagnosed with Spastic Quadriplegic Cerebral Palsy at eight months old. I remember feeling incredibly lost, unsure and deeply angered. What I needed was for someone to tell me everything would be ok; instead I had a neurologist tell us of all the things she would never do, painting a picture of a broken child. I refused to believe a single word. This child had already shown incredible strength and determination, yet because of her diagnosis, was deemed less.

It was at this moment I felt like we were living outside the lines of “normal”. When new parents bring home their new baby, they are flooded with knowledge and wisdom from seasoned parents. When you are a parent to a baby with special needs, you feel alone. There is no one to give you advice. Any information shared comes from doctors, therapists, and nurses. And although helpful information that attributes to the care and survival of your child, it is far different from the love and nurturing information shared between grandparents and parents or close friends and new moms and dads. There is no one celebrating this beautiful child with you. Instead, you are bombarded with sympathy and many, “I’m so sorry’s” and stares, oh…so…many stares.

The early years were extremely difficult. Olivia had many health issues. There were many nights and days spent in and out of hospitals. It seemed every conversation we had with family began with, “how’s Olivia? Is she doing ok?”. As much as we appreciated everyone’s concern for her well-being, conversations around her were generally focused on her overall health and not specifically her. So, I did my best to show “her” to them and to the world.

I began writing about her and shared pictures of her. I wanted not only those close to us to “see” her, I wanted new parents receiving their child’s diagnosis to know their child was beautiful and special and something to be celebrated. I wanted them to see my child, despite her imitations, was living a life that was so much more than Cerebral Palsy. I wanted the community we lived in to open their eyes to people living with disabilities and recognize they to have so much to offer this world.

Olivia is this feisty little force-to-be-reckoned with, red head that had a smile that lit up a room. She loved to read books, go to the park, and play tea party with her sister. She giggled when her daddy flew her around the room. She snuggled into my chest every single night, where I’d literally watch her breathe for hours. She hated being on her tummy, but loved bouncing up and down on the yoga ball. And when she started school, you never seen a happier child!

Olivia’s sense of adventure and fearlessness had the ability to draw others close. She made friends and she learned to communicate with an eye gaze board. Suddenly this child who was once deemed broken, was building relationships and teaching others how to be compassionate and understanding. She inspired others to think differently and to contemplate positive change. She taught others to see the ability!

From the moment I first laid eyes on her, I knew she had the power to change the world. How could she not? She perfectly changed ours.

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Let’s Talk About CP: Cerebral Palsy Awareness Month

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In case y’all didn’t know, March marks Cerebral Palsy Awareness month in the United States. Canada currently doesn’t have a month recognizing the neurological condition that affects approximately 17 million people worldwide and is considered to be the most common disability in childhood, but our family actively recognizes it every single day.

Seven years ago we never knew what Cerebral Palsy was or how it would significantly change our lives.

Olivia had survived a traumatic birth that resulted in hypoxic ischemic encephalopathy, meaning she was deprived of blood and oxygen to her brain. The resulting brain damage lead to the development of Cerebral Palsy.

In the years that followed Olivia underwent over four operations and six surgical procedures, all to improve muscle tone and feeding abilities. She currently uses a wheelchair for mobility, a walker and standing frame for muscle development, intakes all food through a g-tube, communicates using both technological eye gaze software and low tech eye gaze boards, and wears specialized ankle braces. This is what Cerebral Palsy looks like for her, but it is not who she is.

Olivia is an animal lover.

Olivia loves to play hockey with her big brother Nicholas and her Dad.

Olivia is an active sledge hockey player.

Olivia likes to be silly.

Olivia is an advocate for herself and others like her.

Olivia is much more than Cerebral Palsy and so are the millions of others, who live with this condition. See the ability, always.