Finding love on our journey with Dravet syndrome

Love has a way of finding us when we least expect it

Meagan Cheney avatar

by Meagan Cheney |

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When my marriage ended several years ago, I received advice that went something like this: “You will never find someone again as a single mom of three kids, especially when one of them has special needs.”

At the time, I didn’t care if it were true or not. I took time to figure out what I wanted in life and to focus on myself and my children. Austen, my 8-year-old daughter who has Dravet syndrome, thrived during this time. She played sports, worked her way through school and everything it threw at her, and generally just enjoyed life in Texas with her extended family and friends surrounding her.

Eventually, though, I decided to dip my toes back into the dating pool. I quickly began to fear that perhaps everyone had been right. More than one person was scared off by the thought of a special needs child, especially one with a disease that sounds as scary as Dravet syndrome. While Austen is doing great now, it doesn’t change what Google has to say about the disease.

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Still, I was happy being single, so I wasn’t too concerned about whether I’d find someone or not. Did it hurt? Yes. But sometimes life hurts, and that’s OK.

I’d almost concluded that dating wasn’t in the cards for me when I decided to give it another try. I’d met this person several months earlier and knew he was interested in me, but I wasn’t certain it would work. We’d both been hurt in past marriages, so I told him no when he first asked me for a date.

We remained friends and got to know each other and our children in that light. He accepted Austen and knew what the worst-case scenario was with her disease. Yet he didn’t bat an eye. He was there for me and my kids without expecting anything in return. And that won me over.

Eventually, I suggested he should ask me out again, which he did. We became instantly inseparable, and I fell head over heels in love. We moved fast, but it didn’t feel rushed. By last Christmas, we had moved in together, and last month, we got engaged.

After deciding we didn’t want to go into debt for a large wedding, we loaded up the kids on April 1 and went down to the courthouse to get a marriage license. A retired justice of the peace met us down the street and married us on his front porch. My mom and dad drove over with us, and we all went out to eat afterward.

Some might say we’re crazy, but it’s what feels right to us. When you know, you know.

Over the last year, this man, Dakota, has earned my trust, first as a friend, and then as the person I want to spend the rest of my life with. He’s held me in dark times and rejoiced with me in happy ones. When I called him about a seizure Austen had in March, he didn’t flinch, but rather jumped into action to make sure the couch was ready for her. When we arrived home, he carried Austen inside to tuck her in.

He’s also seen Austen’s autism at its worst and never thought to flee because of it. He knows that her seizures could worsen at any moment, and she might not ever be able to live on her own. But he accepts it. He accepts all of us for who we are. And he loves us through it all.

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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