Parenting and Caregiving Are a Balancing Act, but I Won’t Quit

Today something rare happened in our home. My husband woke up before me and quietly ushered our 5-year-old daughter, Austen, into the living room so I could sleep in. I had just started to drift back into dreamland when I heard the door open again. Only this time, it wasn’t Austen wiggling her way into my bed. It was our 7-year-old son, Atlas.

“Mom, since Austen’s out there with Dad, can I snuggle with you for a minute?” his little voice whispered in my ear.

I could have said no. I could have told him to go and play. This was the second time in a decade I was getting the chance to sleep in, after all. But I couldn’t do that. This boy gets so little of my time — he deserved these few moments.

Raising a child with special needs is a time-consuming job, though it’s safe to say that parenting is an all-consuming job. My mind is constantly in a juggling act, trying to remember medicine times and doctors’ appointments, and wondering when the next seizure will be. I wake up in the morning worried that SUDEP, or sudden unexpected death in epilepsy, has taken Austen during the night, and I go to bed praying it stays away for another one.

It’s a hard life, parenting a child with Dravet syndrome, but it’s harder on the siblings. They worry about Austen as well, but they do so with less of their parents’ time than they deserve.

When Austen has a seizure, her siblings are right there, ready to help. If she goes to the hospital, they are left behind while Mom and Dad rush away with her. We should be home to hold them and shush away their fears, helpless ourselves as doctors try to save Austen’s life.

I try to do what I can to spend time with each of my children individually, but the reality is that it’s hard. I can plan all the date nights in the world with my older children, but there is always a cloud hanging over our plans. We know that if Austen has a seizure that day, and Daddy has to work late, we will have to postpone our date. Sometimes it feels very disheartening, watching Murphy kick our plans again and again.

So, when I could be sleeping in, but a certain little boy wants to climb into bed and cuddle, I’ll choose cuddles. When our 13-year-old daughter, Addi, needs me to stay up late to have one of those heart-to-heart talks that teenagers crave but aren’t always sure how to ask for, I’ll stay up late. I’ll soak in all of these extra moments, to the detriment of my own “me time.”

I’ll do it not only because my kids need me to, but because I need this time with them, too.

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Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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