We Take Another Step Toward ‘Normal’

Meagan Cheney avatar

by Meagan Cheney |

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Ever since I have become a mom, I have always chosen to safely co-sleep with my babies until they were weaned. It might not be what works for every family, but for my family, it was the best choice.

My oldest daughter, Addisen, 13, weaned when she was 2 months old, while her younger brother Atlas, 7, weaned when he was 14 months old. Both of them moved to their “big” beds right after they weaned without a problem. Austen, my 6-year-old with Dravet syndrome, nursed a lot longer than her older siblings and also stayed in my bed longer.

Austen weaned at 22 months old, but because of her seizures, she stayed in my bed. She often had seizures in the middle of the night, and I wanted to be right next to her in case she did.

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When her seizures started to improve thanks to the medication Fintepla (fenfluramine), we began to toss around the idea of moving her to her bed. I hadn’t been able to have any “me time” at night because Austen wanted to be right by my side. I couldn’t even read in my bed because the light from my lamp kept her awake.

It was time to make the transition. We had a monitor that would alert us to any rhythmic movement and a seizure-safe pillow so that she wouldn’t suffocate if she did start to seize. We were all ready for this new adventure.

We were, but Austen wasn’t.

Austen is a child of routine. It might be due to the fact that she has autism, or it might just be that she has parents who also like routines. Either way, Austen’s routine was to sleep in bed with Mommy, and that is how she wanted to keep it.

For the last year, I have been trying to get Austen to sleep in her bed. We might go one or two nights, but then she’d be back in my bed and we’d have to start all over. Even when she slept in her own bed I had to lie down with her until she fell asleep, which didn’t give me much of the “me time” I was craving so badly.

And then something changed.

I’m not sure what, and I’m scared to write this in case I jinx it, but Austen started falling asleep on her own in her bed. It has been several weeks, and she is sticking with this new routine. I am starting to breathe a sigh of relief.

I still get anxious, fearing I won’t hear her alarm if she does seize, and she still gets into my bed around 3 a.m. each morning, but she’s starting out the night in her bed, and I’m getting part of the night to myself.

It might not seem like a big step to many, but it is a huge step for Austen and our family. We grab each of these milestones wholeheartedly each time they are presented to us. I’m grateful for another tick on the “normal kid” checklist.

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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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