My introduction to Special Needs Parenting – written for Clubmom.ca

My Introduction to Special Needs Parenting
Posted on April 4, 2014 for ClubMom.ca
by Marcy White

The world was a very different place when I was catapulted into the arena of special needs parenting. Almost 12 years ago, following a wonderfully uneventful pregnancy, I gave birth to a full term, six pound nine ounce baby boy. And, at the moment of his birth, my world changed in an unexpected and horrific way.

My baby had trouble breathing, was an unnatural grey colour and his chest collapsed inwards with every noisy inhalation he took. He spent three months at the Hospital for Sick Children where he was poked, prodded and investigated for the cause of his paralyzed vocal cords, the reason behind his breathing troubles.

Upon discharge, with several additional symptoms identified but no diagnosis on the horizon, Jacob came home to two inexperienced and terrified parents, around the clock nursing and a roomful of medical paraphernalia that was necessary for his survival.

I went online to research my son’s unusual symptoms but eleven years ago I couldn’t access much information. I found titles of articles that sounded relevant so I wrote the information down and emailed them to a family member who is a doctor. He had his assistant contact the library to photocopy the articles of interest. By the time I received the research papers, I needed to remind myself what I was looking for in each article. There were hundreds, and the topics ranged from paralyzed vocal cords, reflux, inability to swallow, projectile vomiting, poor muscle tone, to name a few. It felt like looking for a needle in the proverbial haystack.

Ten months after his birth and shortly after Jacob’s first smile, we had a diagnosis – Pelizaeus-Merzbacher disease (PMD). It was the end of one search but the start of a much bigger and more desperate one – that of a cure or at least a treatment that would prevent or delay the degenerative aspects of this horrific disease from taking hold of my little boy.

The same way our parents joke that they had it so rough when they had to walk to school, in the snow, uphill (both ways!) when they were young, when Jake was born Facebook and other online parent support groups weren’t around. I felt like I was marooned on an island, miles from anyone who could save me. As online support groups developed, I realized I wasn’t alone. And, I quickly learned that the best place to get coping strategies and solutions to issues including where to find the best bath seat or what brand of shoes fits best over ankle braces was from other parents who have dealt with similar issues.

Many years and several research projects later, we are no closer to a cure than we were on the day of Jake’s diagnosis. But, we are so much wiser, stronger and happier than we were during the long, dark days following the diagnosis. It didn’t happen quickly and it’s not easy but I don’t catch myself saying, “I can’t deal with it,” as often as I did when Jacob was younger.

Although saddled with a terrible diagnosis, Jacob is as healthy as he can be and happier than most kids his age. Despite all his challenges, and he has many, he has a mischievous sense of humour, a contagious laugh and gigantic green eyes with enviously long lashes.

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