My story in today’s Swerve magazine was inspired by this blog post I wrote last June. I thought I’d share it again.
On the outside, my son Bennett looks like any typical four-year-old boy. He’s cute, has a naughty streak, loves to jump on the trampoline and relishes tormenting his big sister. But all is not as it appears in his school picture.
Bennett also has a genetic condition called 18q- . He’s missing a small piece of one of his 18th chromosomes. This means he has been slow to hit milestones like walking and talking; it also means he has a difficult time playing and interacting with peers. On the whole his symptoms looks a lot like global developmental delay or autism (which he has also been diagnosed with).
Only one in 40,000 children in North America are born with a Chromosome 18 abnormality. When my husband and I decided to try for a second child and play what we used to half-jokingly refer to as “genetic roulette” (because we were, at…
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I just finished reading your article in Swerve magazine and I wanted to commend you on such an honest, direct piece of writing. I think you likely gave a voice to many people who have children with disabilities, and more importantly, permission to feel just the way they do. I also felt from the piece that you are not working towards full acceptance and peace with everything as it is, but rather acceptance that you will have peace AND struggle with what is on your journey. Wouldn’t it be nice to “get somewhere and all is solved”! But, no, life is all about balancing the joys and sorrows. This insight captures all of our lives, regardless of what our specific circumstances are.
Your article was wonderful. Yes it can be sad and lonely raising a special needs child but the rewards are also great. I too had a special, special boy who grew to be a special, special young man; Iain died 5 days before his 25th birthday last September. Tons of challenges along the way, tons of wonderful moments too: Iain going under a general anesthetic–me beside him until he’s out–he surveys the room and announces to all and sundry “You me ass!!” (you’re a pain in the ass!). I had to laugh as I explained before I left the operating room. Iain was a high needs individual–couldn’t be alone because of his seizures but he lived with us and went to school for 18 years and then he moved to “my own” house when he was 19 or so. URSA looked after him for us then but I brought him home every weekend and we would have our sleepover at mom’s house. Iain died here with me after I put him to bed on that Friday night. It couldn’t have been better planned if I had asked–although, of course, that’s not what we would have chosen–regardless, it was the best way.
Stay positive and I can promise you that your daughter will continue to be the wonderful child that she sounds like. Iain’s sisters are two of the most empathetic, caring people I know and they owe it to their very special brother.
I wish you all good things on your journey with Bennett.