A Day in the Life of a Dravet Syndrome Mom

From the outside looking in, the lives our family must seem chaotic. OK, our lives are chaotic. But isn’t that true for all parents with multiple children? The only things that make our lives different are a couple of diagnoses, a few seizures, and several medications.

Strangers seem to be fascinated by our daily comings and goings, however mundane they may seem to me. So, I thought, why not break down what an average day in our house looks like amid Dravet syndrome, home schooling, and COVID-19?

Buckle up, it might be a bumpy ride.

6 a.m. — I try to sneak out of bed without waking Austen, my 5-year-old daughter who has Dravet syndrome. I just need 45 minutes — long enough for my hypothyroid medicine to kick in and for me to down my first cup of coffee. This is all the alone time I get during the day.

6:05 a.m. — Nope, I was too loud. I hear the pitter-patter of feet coming down the hall as I brush my teeth. Soon Austen’s sleepy smile lights up the room. She’s willing to brush her teeth to be just like me, and then she wants some extra cuddles on the couch.

6:45 a.m. — I can finally have my first cup of coffee. Notice I said “first.” I’ve been known to drink an entire pot in a day. I know it may not be healthy, but I also know I have to stay awake to prevent my entire house from crashing or burning down. It’s called balance.

7:30 a.m. — I start making breakfast. It’s also time for my 7-year-old son, Atlas, to take his eosinophilic esophagitis (try saying that three times fast) medications, and for Austen to have her seizure medications. When you include their daily vitamins, Atlas takes five pills in the morning and Austen takes four.

8-9 a.m. — Breakfast and chores. One of my kids might take 45 minutes to eat their breakfast and 15 minutes to do their chores, while another will take 10 minutes to eat and 15 minutes to feed the cats. I’m running around like a chicken with its head cut off no matter what.

9 a.m. — Schoolwork. Lord help me. I’m home-schooling three kids in three grades. Most days, there are tantrums and tears — often from me and not the kids. We get it done, though.

12 p.m. — Lunch. It’s basically a replay of breakfast.

1 p.m. — This is supposed to be the start of quiet hour. The goal is for Mom to be able to rest for five seconds while the kids read or play quietly. This never actually happens, though. 

2 p.m. — I send the kids outside as long as the weather permits. And trust me, as long as there isn’t a foot of snow on the ground, weather does permit. This wears them out so they are ready for our evening routine. It’s also good for kids to have some unstructured playtime during the day.

5 p.m. — Time to start dinner. Depending on how the kids feel, they will either come inside to play or stay outside. Addi, my 13-year-old daughter, and her neighbor friend are both trained in what to do if Austen has a seizure, and the windows stay cracked open, even in winter, so I can hear them yell and go outside if I’m needed.

6 p.m. — Dinner. We call this “breakfast the third.” Afterward, everyone helps to pick up the kitchen. Because I cooked, I shouldn’t be solely responsible for cleaning.

7 p.m. — Bathe, brush teeth, tidy bedrooms. Screaming because it can’t possibly be bedtime yet. How dare I make it be evening time? All three kids take meds at this time as well. Three each for Atlas and Austen, and one for Addi.

8 p.m. — Storytime. This is my favorite time of the day. I believe reading children’s chapter books helps to develop their higher-order thinking skills. We are currently reading “The Chronicles of Narnia” series by C.S. Lewis. It’s not idyllic, as no one sits still. Austen might be chasing the cat around the room, and Atlas might be standing on his head, but we are all in the room together listening to Mama read. Even if she has to yell sometimes to be heard.

8:30 p.m. — The two littles are in bed, and Addi gets to read in her room for another hour. I stagger into the bathroom and try not to fall asleep in the shower. I try my hardest to stay up long enough to read a chapter of whatever book I’m reading, but usually I’m asleep as soon as my head hits the pillow. I say a prayer of gratitude for another day without seizures, and hope I’ll manage to sneak out of bed tomorrow without waking up Austen.

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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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