Learning to Navigate Our New Normal

Meagan Cheney avatar

by Meagan Cheney |

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“Mom, I’ve decided I don’t want you working anymore. Now I have to go to school even earlier, and I get home even later.”

Those are the words of my 8-year-old son, Atlas. Until this year, I have mostly been his stay-at-home mom. I received my bachelor’s in elementary education while I was pregnant with him. But then his little sister Austen, 6, who has Dravet syndrome, came along 19 months later. Her seizures started five months after she was born.

I had originally planned to go back to work when Atlas was 3 and able to go to preschool, but Austen’s constant seizures the first several years of her life made me feel it was no longer an option. It wouldn’t be fair to a school or classroom of students if I were constantly leaving to take care of Austen every time she seized.

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So I stayed home. I was there all day, every day, fulfilling the needs of my home and family. I loved it, although it was tough at times.

In the fall of 2019, Austen became part of the Fintepla (fenfluramine) clinical trial. Over the next few months, her seizures happened further and further apart. We even went a whole semester without her having a seizure at school. I started to think I might be able to move out of the home and into the classroom.

But then COVID-19 happened, and I suddenly went from being a stay-at-home mom to a stay-at-home, home-schooling mom. I was with my children all day, every day. And they got used to it.

Now, thanks to the COVID-19 vaccine, and after a divorce and a move to Texas, the kids are back in school and I’m finally in the classroom — almost nine years after graduating. While Atlas has had the hardest time adjusting to our new normal, it’s been tough on all of us in some ways.

Austen, for example, doesn’t like that I sometimes don’t have time to make her lunch for school each day, which means she has to eat the lunch her school provides. This sets off her tantrums and kicks my mom guilt into high gear.

But we are managing, and slowly getting used to it. Atlas still isn’t happy about his long days, but our evenings and weekends together are more precious. Our new normal will take some getting used to, but I’m looking forward to the future it leads us into.


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.

Comments

Calli Wilson avatar

Calli Wilson

I’m finally employed again, after the 21 year Dravet Challenge. I was able to wait until my son graduated, and was settled in an adult day program. It has been a huge blessing for us. Our son also gained supported employment one day/week. We’re hopeful he will establish some successful patterns and be offered more hours over the years to come. Returning to work can definitely turn your time together into a deeper, more intense experience, after years of constant contact. Best wishes.

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Therese avatar

Therese

Hi Meagan. Thank you for your updates on how your family is doing! As we live in Sweden, I am wondering if possible to hear more about your experience with Fintepla? (Our daughter with Dravet turns 5 years old this spring.) Have you experienced good or bad (or both)? side effects? If possible to share :-) Best wishes! Therese

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