When Special Needs Moms Get Sick

Moms don’t get sick days.

I remember my mom telling me that one day when I called in desperation. The Army had recently moved us to California for my husband’s training, the first time I had ever been away from my family long-term.

And there I was, with a sore throat and a pounding headache, and a 3-year-old named Addi, who had enough energy to power the entire street.

I couldn’t wait to get back to Texas, where my extended family would let me have sick days. Little did I know that it wasn’t in our future.

I take that back, we did move back to Texas for a short time. Then Austen was born. And then she started having seizures. Shortly after her diagnosis, we found ourselves leaving Texas again, this time for Colorado, where there were specialized doctors and better services for children with Dravet syndrome than we could find in our home state.

Colorado is different than California, though. Because not only am I a stay-at-home mom to three kids, but also one of them is medically complex.

I can’t lie on the couch and let Austen watch TV all day, as she wouldn’t go for that. She has to be watched 24/7, not only because of her seizures, but also because she tends to elope, or wander away.

Austen doesn’t understand the danger, so she can’t be left alone. But the catch is that I also need to prevent her from getting sick, if at all possible. The adenovirus, which would look like a cold to a healthy person, has put her in the pediatric intensive care unit on more than one occasion. Fevers equal status seizures in our world, and status seizures can be deadly.

It’s a tough game to play, and meanwhile, my husband runs his own business. So, he can’t just close the store every time I’m sick. My family can’t jump on an airplane to save us, either. What can I do? I simply can’t get sick.

That’s a joke, sort of. 

Austen’s battle with Dravet syndrome has caused me to take my health more seriously. I do what I can to keep my body healthy enough to fight off colds and such before they become an issue. But there is nothing I can do to keep myself from getting sick all the time.

There is also nothing I can do to keep Austen from ever getting sick. It’s a hard pill to swallow, but it’s the truth. Kids are germy little creatures, and colds seem to run rampant in our house during the winter months.

When Austen was younger, I used to beat myself up over each cold she came down with. What could I have done differently to keep her well? What did I do wrong that resulted in her getting sick? Then one day her sweet pediatrician gave me some down-to-earth advice. Colds happen, you can’t fully prevent them. You just have to do your part to keep the germs at a minimum. But they will never fully go away. 

She also told me it wasn’t healthy for my home to be hospital-grade sterile, and she didn’t recommend spraying the two older kids down with disinfectant each afternoon when they returned from school. That part might have been a joke, but it was something that had crossed my mind.

These last few days have been the perfect example of how colds sometimes just happen. I woke up one morning to the familiar tingling in the back of my throat, and what I call the “about-to-get-sick headache.” I boosted myself with vitamin C and zinc, but as the morning progressed, I felt worse and worse.

Luckily for me, my oldest is now 12, and although I would never make it her responsibility to take on full responsibility for Austen, she helped me out a lot. She played with her while I rested on the couch, and did a little bit of extra cleaning and disinfecting without me even asking.

For my part, home schooling happened individually, with each kid on the opposite side of the couch from me. I’ve washed my hands constantly and might have come close to polishing off a bottle of disinfectant.

I don’t know if my efforts to keep the kids, and especially Austen, healthy have been successful. I suppose the next few days will tell. I’ll keep a watch out for her temperature and any warning signs of seizures. If she does get sick, I know I did all that I could to prevent it. If she seizes and has to go to the hospital, I will still feel guilty, though. I don’t think I can help that.

One thing that is certain is that I will keep going, even if I wake up still sick tomorrow. Because as my mom said, mom’s don’t get sick days.

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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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