Why my 10-year-old daughter still sleeps in my bed
Both Avery and I fear the possible repercussions of her seizures
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I woke up and rolled over to the ordinary sight of my daughter, Avery, lying beside me. Her long, underweight body wrapped up in the blankets is an everyday reminder that our life and sleeping arrangement are unique.
Most nights, it’s impossible to forget she is there. Her lanky legs entangle with mine, her bony elbow digs against the small of my back, or she simply snuggles as close to my body as is physically possible.
All of my kids went through phases when they wanted to be in Mom’s bed, but this is different. Avery is 10 years old, and she’s still here every single night. She started having seizures when she was only 3 months old. My initial decision to have her sleep in my arms was purely fear-driven. What if she had a seizure at night and we didn’t realize? The only way I knew how to protect her was to keep her in my arms, so I did.
Her seizures persisted, and at 10 months old, she was diagnosed with Dravet syndrome, a rare, catastrophic, and lifelong form of epilepsy. Because of this, even when she grew out of my arms, she stayed in my bed. For years, I slept with one arm around her, always aware of whether her body was resting or convulsing, constantly checking that she was breathing.
As the years went on, the seizures didn’t stop. We tried so many treatments, but for a long time, there was very little seizure control. Despite our attempts to find a safe sleeping alternative for her — purchasing seizure detection devices, training her service dog to alert us to her seizures, moving her bed right beside ours, using a hospital-grade pulse oximeter — I could never get her out of our bed and into her own long term.
Every prolonged seizure reawakened the fears that had initially driven me to have her sleep in my arms, and the anxiety kept me awake at night. Truthfully, even with those bony elbows in my back, I slept better with her in my bed than I did the few nights I was able to get her adjusted to her own bed.
The fear isn’t just mine
As my daughter has gotten older, she’s experienced a lot of cognitive improvement and has begun to understand the realities of her condition. We are also now in a season of much better seizure control, which prompted me to try transitioning her to her big-girl bed again in the weeks following her 10th birthday.
After multiple nights of very, very short stints when she actually stayed in her bed, I decided to try lying beside her in her bed. It was on that night that I recognized this fear of seizures no longer belonged just to me; it belonged to my daughter, too.
Her twin mattress isn’t big enough for both of us, but I lay by her side anyway until it seemed like maybe she was ready to doze off. I clumsily slid myself off the bed onto the floor, kissed her cheek, and told her I loved her. As I began to head to my own room, her little voice pierced through the silence. “But Mommy, what if I have a seizure and you’re not here?”
My poor, sweet girl understood the fear that I’ve held on to for the last 10 years. For the first time ever, she verbalized that she, too, was nervous about sleeping on her own, that she, too, was worried about a seizure taking hold of her brain and what it would mean if no one were there to try and protect her.
After some age-appropriate discussion about fear and seizures, I found myself left with a decision to make. While I don’t want my child to live in fear of this diagnosis, I do want her to feel safe. How in the world does one even respond to the question she asked?
All I could think to say was, “Don’t worry, sweet girl. Come get in bed with Mommy.”
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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