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How My Son's Medical Condition Impacted My Parenting Style

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In the years before my son was conceived and then born, it was easy to imagine the way I wanted to parent. Maybe it’s because we spent so much time in pursuit of becoming parents that I was able to fantasize so much about the mom I was going to be. I read the blogs and articles my friends posted on social media discussing various parenting styles. I decided I was going to be a “free-range” mom. I would definitely not be a helicopter mom. I’d figured it out. Case closed.

Shortly before my son was born, I learned we would be moving to Germany for my husband’s job. As I learned about German culture I became even more excited. German kids are independent. They get outside every day. They are free-range kids without having it labeled. It would be the perfect place for me to hone my parenting style.

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Then Rowan was born. He was never an “easy” kid. He struggled to gain weight, measuring at the zero percentile for the first six months of his life. He never slept well. I never slept well. But there were no alarm bells at first. As he grew older, I tried to give him independence and learned my husband tended toward hovering. We found a delicate balance. Then on the day of Rowan’s second birthday he had his first seizure. The memory is seared into my brain.

At first we thought it was a one-time thing, but after a few months, we realized it wasn’t. Rowan had more seizures. He was diagnosed with epilepsy. He was hospitalized five times that year. Eventually his diagnosis was changed to Lennox-Gastaut syndrome (LGS), a particularly severe form of epilepsy marked by developmental delays and resistance to medication.

He was having drop seizures. Everything would seem fine when suddenly, out of nowhere, he would fall. He hit his head countless times. He face-planted into a meal more than once. The doctors wrote a prescription for a protective helmet. Suddenly being a free-range mom wasn’t an option. I had no choice. I had to hover. I had to be ready to catch him whenever possible. Rowan’s balance was poor and simple actions for most 2-year-olds, like climbing stairs, were potential hazards even without the possibility of seizures. I didn’t like to even leave him alone in his high chair while I poured a bowl of cereal or made a cup of coffee.

My grief was overwhelming. I was worried about my son. The long-term prognosis for patients with LGS was devastating. I grieved the loss of a future I’d always imagined for him. I grieved the loss of the parent I’d always assumed I’d get to be. Rowan is a child with epilepsy. He is also smart, strong-willed, deeply loving and empathetic, intense, funny and aggressively friendly.

We are fortunate right now. We have found a medication combination that is working for him. He hasn’t had a seizure in almost four months. That is a big, big deal. He is working with speech and occupational therapists and making huge strides in his development. He is also making huge strides in his confidence. He is back to believing that he can do anything. I’m back to striking a delicate balance between offering him safety and freedom. We don’t make him wear his helmet these days.

I let him run and jump and sometimes fall and skin his knees and be a kid. Right now that is where we are. And that is all that matters. Now the old fantasies just make me smile, another joke about the perfect mom I was going to be before I ever became one. But it was never really my choice. I know that now. My parenting style was never going to be determined by blogs. It was always going to be determined by Rowan.

Originally published: June 7, 2018
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