The stress of caring for a child with special needs affected my health

My entire world revolves around my children. As a special needs mom, I often lost my own identity in the fight to not only give my late daughter, Austen, a better life, but to keep her alive.

But when Austen was about 2, I found myself at a point where I felt like a failure. I was so tired all the time, and no matter when I got to bed, I woke up the next morning still tired. The result was an irritable mama who often sat and just cried out of frustration.

Eventually, the thought crossed my mind that maybe the tiredness and brain fog weren’t solely due to lack of sleep and the amount of medications, therapies, and seizures I was keeping track of every day as part of Austen’s Dravet syndrome. Maybe something else was going on.

It took a while to convince my doctor to order blood work for me, but when I got the results, they showed I had hypothyroidism. Just like with Austen’s diagnosis, a monster is a bit less scary when you know its name.

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Extreme stress

Still, it would be almost a decade before the cause of it was discovered. My labs had begun to spiral, and my symptoms came back with a vengeance. An endocrinologist told me I was having a Hashimoto’s flare-up, that my immune system was attacking my thyroid gland, causing it to not produce the hormones I needed to stay healthy. The main cause of the flare-up? Extreme stress.

Looking back, I think my first flare-up occurred the year Austen was born. I lost two of my grandfathers, gave birth to Austen, lost a cousin to a tragic accident, and then Austen began having seizures — all in one calendar year.

My symptoms did improve once I found the right medication and dose, and I was good for a while. But then, I lost Austen and my uncle Jerry within six months of each other, and the result was another flare-up — one that’s lasted almost two years now.

First things first

Raising children — and especially caring for a child with a serious illness like Dravet syndrome — can cause us as parents to forget our own health issues. We put our children’s needs first because that’s what we think we should do. Many people told me my symptoms were only in my head, or that it was just part of the hand I was dealt as Austen’s mom. I needed to get used to it because it wouldn’t get any better, I was told, and I believed this for a long time.

But I’ve learned that we have to advocate for ourselves as fiercely as we advocate for our children. We need to be at our best to give our best to them.

I’ve begun to make small changes to support my health. I’m walking, and I’ve cut out caffeine and cut down on processed sugar. And I’m working at lowering my stress levels and showing myself grace. I feel better than I have in a long time.

I’m not making these changes just for the sake of my children. I’m doing them for me, as well. Because sometimes putting myself first isn’t being selfish. It’s about taking care of myself, so I can best take care of the people that matter most to me.

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.