Leaving my daughter with Dravet syndrome in the care of her teen sister

A couple years ago, I was talking with several other parents when the topic of parenting “sweet spots” came up. They all had kids similar in age to mine, with one difference: My youngest daughter, Avery, has Dravet syndrome.

These parents talked about entering the season when their kids are old and independent enough to be left home alone. Some of the couples said they could now take a night off from parenting without worrying because their eldest kids are old enough to care for their younger siblings. “It’s a whole new phase of parenthood,” one said.

I smiled with everyone else, but my heart ached a little because my husband and I hadn’t experienced that sweet spot, and I wasn’t sure if we ever would.

Avery is now 10, and my older kids are 13 and 15, but aside from a couple scenarios where I was out of the house for mere minutes, I’ve never left Avery alone with her siblings. Avery’s Dravet diagnosis and the uncontrolled seizures it causes have made it difficult to leave her with anyone.

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I’m always worried about the ‘what-ifs’

The truth is, my older kids have witnessed more of Avery’s seizures than anyone else I could potentially leave her with. They’ve been the ones to dial 911, find the oxygen tank, or grab something soft to put under her head. They were there time after time when the ambulance arrived and carted their baby sister away, often while she was still seizing.

Riley and Jase are both great siblings and responsible teenagers who are incredibly familiar with Avery and her needs, abilities, and communication. My fear has never been that either lacks the capabilities to care for their sister; instead, I worry about the “what-ifs.”

What if a prolonged seizure, known as status epilepticus, takes place? What if my older kids are put in a traumatizing situation? What if the worst-case scenario takes place? The scenario I, as a parent, am always aware of but hope never happens?

I never want to put my kids in an unfair or bad situation. No parent does. And yet, if they are going to help supervise and care for Avery, there is no guarantee that it won’t happen. My experience has ingrained in me that we cannot live in the “what-ifs.” If we did, our family would never do anything.

So, today, partly out of bravery and partly out of necessity, I left Avery in the care of her older sister. Avery was elated by this, and Riley didn’t seem bothered. To provide additional context, my workplace is only about 10 minutes from our home, and I have my phone with me at all times. That was a big reason why the arrangement worked.

Avery’s first day at home with her sister was great! There were no seizures or difficult behaviors. I called multiple times to check in, and everyone was doing well.

While I’m grateful for this great day, I also know it was just one day. It opens the door to allowing Avery to stay with her older siblings from time to time, but I will likely never feel comfortable placing this responsibility on my older children regularly.

The “sweet spot” of parenthood may never be a possibility for us, but today I left my daughter with Dravet syndrome in the care of her teen sister, and everything was OK.

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.