My House May Be Messy, but My Daughter Feels at Home

I want to be a domestic goddess and have a home that’s pristinely clean whenever you open the door.

I want a home that’s company-ready, whether you come through the door at 6 a.m. or 6 p.m. I want a home that screams, “The children that live here are well-behaved and know how to pick up after themselves!” 

Lately, though, I’ve come to the conclusion that it will never happen.

I come from a long line of neat-freak women. So, it pains me to sit here and look at my messy house. It’s not dirty, but it is messy. And yes, there is a difference between the two. In my house, that means my toilets are cleaned every day, but you might trip over an L.O.L. doll or seven when you walk through my front door.

The culprit is my 5-year-old daughter, Austen, who has Dravet syndrome. We have had a fabulous run of seizure-free days, thanks to Fintepla (fenfluramine) over the last few months. But the fewer seizures she has, the more energy she has, and the worse her behavior gets.

We try to do things like having her help pick up her room, but unless someone walks directly alongside her, she has trouble completing multistep tasks. So, if you tell her to pick up her mess, she might pick up two or three toys, then get distracted by another toy and take it into another room. She effectively spreads the mess out and makes it worse.

On top of her usual mess, Austen is also a sensory seeker. She is specifically obsessed with water. She loves to pour it from one container into another, or dip her L.O.L. dolls into the water and make them color change. She loves to feel different textures, and has more than once broken eggs onto the floor while I’m cooking because she likes the slimy feeling of the yolks. The raw eggs go everywhere, and I have to clean them up off the floor, the counters, and Austen as well.

I try to curb the problem by getting her involved, and curb the clutter by keeping the items in our home to a minimum. I even have a strict cleaning schedule. Still, I have Austen. And Austen is a mess, both figuratively and literally. 

So, as in many other aspects of my life, I am learning to adapt. I am realizing that having toys all over my floor doesn’t mean I’m a horrible homemaker, though I still have room to improve. Instead, I have a child who is growing and thriving in my home. My house is a place where she feels comfortable exploring, learning, and being herself. It’s a safe place where she can find a plastic cup on her own, fill it with water, and spend an hour entertaining herself. 

My mop and vacuum might get more use than they would in the average household. But that’s OK. Because it’s her home, too, and she’s happy here.

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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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