I didn’t stop being a mom when my child with Dravet syndrome died
This month, I'll put my grief on the back burner to celebrate my other daughter
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Eleven years ago, I brought new life into the world in one of my favorite months of the year, when things begin to warm and blossom.
May 19, 2015, was one of the three best days of my life — the day my daughter Austen was born. The two other best days were when her older siblings, Addisen and Atlas, were born.
A tiny bundle of joy, Austen arrived 11 days earlier than expected. She brought a new light to my world that had seemed pretty dark since the death of my grandfathers only a few months before. She had 10 fingers, 10 toes, and a head full of dark, brown hair. I remember holding this precious new life on my chest and thinking that she was absolutely perfect. In those early morning hours, my world was perfect.
A perfect beginning comes to an end
But just a few short months later, everything would come crashing down with the realization that Austen was a very sick little girl. By her first birthday, she had been hospitalized multiple times due to the seizures that ravaged her tiny body. Less than two weeks after her first birthday, she was diagnosed with Dravet syndrome.
We knew from the day we got her diagnosis that Austen might be living on borrowed time. So we let her live life to the fullest. Every milestone, every birthday, was spent celebrating her in the biggest way possible. Not just for her memories, but for ours.
Last year, I think I cried through all of May. I should have been preparing to celebrate Austen’s 10th birthday with her, a very big deal in the world of Dravet syndrome, but instead, two years ago, we interred her ashes between the graves of two of her great-grandfathers on the first Saturday of the month.
On her birthday, instead of waking up to her excitement, I woke up to silence. Still, we celebrated our girl. A family cookout and a trip for ice cream meant we could all cry, laugh, and remember her together. We will celebrate her birthday like this every year.
But I can’t allow myself a month of grieving like I did last year, even though I want to crawl into a hole and not come back out until July. This month, my daughter Addisen will graduate from high school, and she deserves the energy grieving would take out of me.
I didn’t stop being a mom when Austen died. Life keeps on going. My other children deserve to have a mom who is just as present in their lives as she was in the “time before.” I can’t let my mourning interfere with the joy I have for the milestones in my other children’s lives. I can’t let missing Austen take anything from Addisen, who has worked so hard for the last 13 years.
So this month, I will grieve in private. In public, I’ll let myself feel the elation and pride for one child as she reaches a big milestone. I’ll cry tears over her growing up, and the fact that someday, she’ll spread her wings and fly from the nest. I will make this time for Addi a joyful one, just as I would have if Austen were still here. It’s what she deserves.
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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