Honoring my husband’s birthday as my daughter would’ve wished

My late daughter, Austen, loved birthdays, even when they weren’t her own. She loved any opportunity for a celebration, cake, and presents. And hers or not, she was going to help open them.

Last year, the birthday of my husband, Dakota, was only two days after Austen’s memorial. We were all still in shock, but I made sure to get him a cake and have a small dinner with just us and the kids.

He deserved it, and Austen, who had Dravet syndrome, would’ve insisted on it.

Dakota might not have been a part of Austen’s life for long — she was only 9 years old when she passed, and we hadn’t been married long — but he loved her without hesitation. I told him from the start about her diagnosis, and even though she was doing so well at the time, I was frank with him about how it might end. He didn’t care. He told me he’d love Austen as if she were his own no matter what, and that’s exactly what he did.

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He was the driving force behind our Florida vacation, he taught her how to fish, and he promised to take her hunting someday. When he first witnessed one of Austen’s seizures, he held her until she woke up, stroking her hair and telling her everything was going to be OK. Dakota might not have contributed DNA to Austen, but he loved her as if he had. And she knew it.

Over the past year, Dakota has been my rock. He’s held me up when I felt like I couldn’t stand on my own. He’s never let me give up, but he’s also taken on a lot of the weight I usually carry in our household; he’s tried to do anything he can to make life easier on me. He grieved alongside me and listened without judgment to every happy memory or breakdown I’ve had. Even if they happened simultaneously.

This year’s special celebration

This year I wanted Dakota’s birthday to be special — partly because last year’s birthday was so horrible, and partly because he deserved it. But I knew if I tried to plan something with him, he’d veto any idea I had. He’d suggest we do something for the kids, or say we didn’t need to spend the money.

So I planned something for him in secret. I called our friends and family and explained what I wanted to do, and all of them came together. Some cooked, some helped me clean, and some kept Dakota busy all day so I could prepare for the party.

When Dakota arrived home from fishing, he was confused to see his granddad’s truck and vehicles of my family members parked outside our house. He still looked confused when he stepped in the house and spent several seconds just looking around and trying to figure it all out.

“I wanted to show you how loved and appreciated you are,” I told him later. I wanted the house to be filled with everyone who loved him and cared for him, to thank him for all he’s done for us this past year.

Even though our family’s hearts have giant, Austen-sized holes, they can still be filled with love for each other. And although I wished Austen had been here to help open his presents or eat his cake, I know we celebrated exactly how she would’ve wanted.

The truth is that Dakota could’ve prevented himself from going through the pain of the last year. He could’ve walked away when I first told him how all this could end. But he chose to stay; he chose to love me and my children. He chose our family, knowing how much heartache it could eventually cause him.

And he still chooses us every day.

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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