The Anxieties of a Dravet Syndrome Sibling

Meagan Cheney avatar

by Meagan Cheney |

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“Mom, is Austen OK?”

Addi, my 13-year-old daughter, was on the school bus headed home last week when she sent me the text. I was confused but assured her that her 6-year-old sister, who has Dravet syndrome, was fine.

It turns out that an ambulance had passed Addi’s bus and was heading in the direction of our home. Instinct had kicked in and she had panicked, wondering if it was traveling in the direction of her sister.

Addi was 7 when Austen was born. Their 8-year-old brother, Atlas, was 2 at the time, so he was too young to remember when Austen didn’t have seizures. But for Addi, Austen’s journey with Dravet syndrome has been difficult.

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As parents of a special needs child, our brains seem to be in a constant state of PTSD, although CTSD, or chronic traumatic stress disorder, may be more accurate. Our healthy, neurotypical children also sometimes live in this state of anxiety.

It doesn’t necessarily rule their lives, and for the most part, you wouldn’t even know it was there. But it does present itself in small ways and at random times, such as when an ambulance passes. Or you hear a scream from the other end of the house. Or your sick sibling wants to take an uncharacteristic nap. Or your parents suddenly are awake in the middle of the night and you wonder if your sister is just having trouble sleeping or if she’s seizing.

I’ve noticed Addi tense up even when she sees a character on TV having a seizure. (I also do that.) And she’s developed a habit of defending kids being bullied, such as last summer, when she came to Austen’s aid at the playground.

At times, I am happy my two older children have a Dravet syndrome sibling. Through Austen, they are learning compassion, responsibility, and the fact that someone’s worth can’t be measured by their health or abilities.

Other times, though, I hate what they must go through because they have a sister who needs extra care. They’ve both had events canceled on them because Austen had a seizure, and they know that at times, my focus needs to be on her more than them. Then there are little moments that just break my heart, like when my daughter frantically texts me to make sure her sister is OK.

Dravet syndrome is a terrible beast. It not only wreaks havoc on the person who has it, but also on their entire family and community. All we can do is keep trudging on, one day — or one moment — at a time, hoping that tomorrow will be better and someday we’ll have a cure.


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

Katherine Smith avatar

Katherine Smith

We need sibling awards for those extra special siblings that go above and beyond do often.

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