Even on hard days, my daughter can always make me smile

My 10-year-old daughter, Avery, has a rare, catastrophic, and lifelong form of epilepsy called Dravet syndrome. Recently, I have expressed the difficult emotions and experiences that accompany this reality. These hard things are all true, but there is another truth, too: She makes me smile every single day.

Some mornings, getting ready for school is hard. She’s struggled to adjust to the back-to-school routine and refuses to wake up. On many days, I have to physically lift her out of bed and onto her feet to begin her day. Avery is never in any hurry, which often results in my being late to work. Some days, she makes me so incredibly frustrated that I find myself needing to pause and take a timeout before my workday even starts.

But even on those extremely difficult mornings when I want to scream, I know without a doubt that at some point in the day, she’ll make me smile. She might dance down the hallway or run to hug a friend. She might try to deliver a joke that isn’t quite right but still makes me laugh. She might simply exist in a way that is normal for the world around her, but difficult for her, and I can’t help but pause to soak in the miraculous reality of an ordinary moment.

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Some days her difficult behaviors flare up. This often dictates how the rest of the day will go, not just for her, but for me, too. These behaviors may look like a tumultuous tantrum for absolutely no reason or an unreasonable emotional response to a situation. She might throw herself on the floor in the middle of a store aisle and refuse to get up. She might spit and scream and cause a big scene, or she may take off running — so there I am, a grown adult, chasing her through the middle of the store. Some days, her behavior makes me feel absolutely humiliated.

Still, on those days, once the chaos has settled, she will make me smile.

Some days, she doesn’t sleep, and I can’t figure out why. She fights me on every single thing, including taking her medications, eating food, and taking a bath — things that have to happen. She will want me and only me, even when I am absolutely touched out. On those days, it can feel like she needs more of me than I have to give. Some days, she makes me absolutely exhausted.

But even when I feel absolutely empty, she will make me smile. She might offer a perfectly placed, smart-aleck comment that I was unaware she even knew about. Maybe she will learn a new sight word or complete a math problem she has been struggling to solve. She may snuggle up next to her brother or sister, or tell me a blurry story about the boy she has a crush on and his new girlfriend, who she obviously is not fond of. I’ll smile.

I could go on and on about the hard moments of parenting a child with Dravet syndrome and developmental disabilities. I could also go on and on about the beautiful moments. In all my writing and advocacy, I hope people will see both truths. Some days are incredibly hard, but every single day is a gift. One does not negate the other. The two realities don’t seem to make sense together, but they are undoubtedly true.

Even on the hard days, I’ll smile because watching her live life is still the greatest gift.

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.