Overcoming My Fears to Give My Kids a Better Life
Our lives are changing, and this time, it isn’t due to the effects of Dravet syndrome.
I have mostly been a stay-at-home mom for the last 11 years. I have a degree in elementary education, but when we had our second child, Atlas, who is now 7, I figured I would wait to teach until he was school-aged. Then, 19 months after Atlas was born, Austen, our 6-year-old daughter with Dravet syndrome, came into our lives. At that point, all of my plans to work outside the home went out the window — until now.
When Austen began having seizures at 5 months old, working outside the home no longer seemed like an option for me. Her seizures occurred without rhyme or reason, and I knew it wouldn’t be fair to an employer if I had to leave all the time to take care of her.
Although the treatment Fintepla (fenfluramine) has dramatically decreased the frequency of her seizures since late 2019, I still haven’t allowed myself to think about working. I just keep waiting for the other shoe to drop.
That’s the thing about having a special needs child: So much of life is tumultuous. I get so used to curveballs, such as emergency room visits, PICU stays, and medication reactions, that when life does start to calm down, I don’t trust it. I live in a constant state of anxiety.
In the last two years, I’ve been holding my breath waiting for Fintepla to suddenly stop working, for the seizures to return in full force, and for my days to once again be accompanied by the humming of the oxygen concentrator.
So far, it hasn’t happened. And life events, like divorce, are pushing me off the edge that my fears had me clinging to.
In two hours, I have a job interview — my first one outside my home in almost 12 years. I am terrified of being away from my kids every day. I won’t be there to give them snacks when they get home from school, or watch from the window as they get on the bus each morning.
Mostly, I’m terrified that I won’t be able to get to Austen in time if she has a seizure. What if the school calls, and I can’t get to her before the ambulance does?
I’ve spent the last 11 years of my life devoted to my kids, and the last six devoted mostly to Austen’s health.
Part of being a special needs parent, or any kind of parent, is making sure your children live their best possible lives. It’s a parent’s job to make sure our children are taken care of, emotionally and physically. Any major changes bring out the parent guilt in full force.
Deep down, though, I know my kids will be OK, and so will I. We will get through this like we always have, and I truly believe we will be better for it.
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.