This year, I celebrated my daughter’s birthday without her

I made a deal with my late daughter, Austen, when she was just 1 year old. The deal was that she’d make it to 10. That was because she had Dravet syndrome, and statistics showed that most deaths attributed to the syndrome occur before a child is 10 years old. I figured that if I could get her to that age, then I could get her to adulthood.

But I couldn’t.

Nine years, one month, and 10 days: That’s how long Austen graced this planet before God called her back to heaven.

Austen’s ninth birthday was a fun one. That day, I woke her up by singing to her, as I did every year. We skipped church and hung out as a family. That evening, we had all of her favorite foods — quesadillas and macaroni and cheese — along with the strawberry-topped cake she’d requested. She opened presents from our family, and the anticipation continued because her birthday party was scheduled for two weeks later. It felt like we just kept celebrating.

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On the day of her party, we rented an inflatable Slip ‘N Slide for our yard. My husband and Austen’s uncle grilled burgers, and laughter from her siblings and cousins filled our home. The candles were blown out on another strawberry-topped cake, and I found myself thinking, “We’re almost there. One more year and we’ve made it to 10.”

How wrong could I have been?

I thought this year would see an over-the-top celebration for my girl. I thought we’d be shouting from the rooftops that she’d made it, that all our work had paid off. Instead, I woke up to the sound of silence. No excitement, no anticipation. Just an overwhelming sense of emptiness that she was gone.

I still make sure she’s celebrated, though. I bought her an LOL Surprise Doll and took it with me to the cemetery. I sat at her grave with my husband and opened the doll box with her. I told her how much I missed her and loved her, how sorry I was that I couldn’t save her, and that I’d give absolutely anything for one more birthday, one more minute with her here with me. The cemetery ground was still covered in buttercups, so we swept the dirt off her headstone and placed a few on top of it, along with the LOL doll.

Later that evening, we went with family members for ice cream, another of Austen’s favorite treats (as long as it was strawberry), and then cooked burgers at my aunt’s house. Everyone was just trying to keep each other occupied, as all of us were feeling the overwhelming void she’s left behind.

That wasn’t how I imagined Austen’s 10th birthday would go. But it’s my reality: birthday candles she can’t blow out and presents she can’t open. But we’ll keep doing it, every year, for her, because she’s worthy enough to be remembered — this year, next year, and every year until someday I join her in heaven.

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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