I find myself holding on to my late daughter through her things

My daughter Austen, who passed away last summer at age 9 from complications of Dravet syndrome, wasn’t attached to many things. It may have been related to her autism, but she just wasn’t that interested in many physical objects. But the few items she did care for, she held on to with a fierce grip.

Her pink dinosaur costume is a great example. A secondhand contraption of pink and yellow fabric, held together in the back with small Velcro pieces, it had a big puffy tail that wiggled with every step she took. Austen was so attached to this costume that she wore it every day for almost a year. I had to sneak it from her some days just to be able to wash it, and at one point I even asked my grandmother if she thought it’d be possible to make a pattern of the beloved costume so Austen could keep wearing it. By the time she finally let it go, the once long sleeves and full legs went down only to her calves and elbows.

Another example is her baby doll, Sarah. Austen had Sarah for a couple of years before she took any notice of the doll, but once she did, she got so attached that I had to hunt down a new one when Austen accidentally left Sarah in Texas during one of our trips from Colorado.

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The other two items Austen loved were ones she held on to even longer. Both were given to her when she was born, and both were still lying on her bed the day that she died.

Ellie, her pink elephant, was a gift from her big sister, Addisen, now 16. Ellie had been Addi’s favorite stuffed animal, and she wanted her little sister to have a gift from her to love and cuddle.

The other item was Austen’s soft patchwork blankie, given to her by an aunt. In many of Austen’s baby photos, the blanket is draped over her, but as she grew, she was never ready to let it go. Over the years the seams tore on the patches, hanging down around the backing like tassels. I’d sneak it away about once a month to wash it, but I’d better have it back in her bed before nighttime, or Austen would let me know I had messed up.

The day after Austen’s accident, Dakota, my husband and Austen’s stepdad, returned to our house and asked me if there was anything I wanted. I had placed Ellie in Austen’s arms during her last ambulance ride, but her blankie was still lying on her bed. I asked him to grab it for me, and ever since, I have held it in my arms each night as I slept.

At first, the plan was to sleep with it only until we got my china cabinet into our new house. All of my children (Addi, Atlas, 11, and Grace, 9) were very concerned about putting Austen’s special things in it to keep them safe. Ellie now sits on the top shelf, front and center, with one of Austen’s favorite action figures in her lap. Her princess crown sits on the deer mount above the cabinet, and the plan was for her blanket to be folded under Ellie.

A week or so after we put the other items on display, Atlas asked me when I was going to give up the blanket. He let me know, in no uncertain terms, that it was a little weird for a 30-something-year-old woman to be sleeping with a baby blanket every night. And he’s probably right.

But, in a way, holding Austen’s blanket is like holding her. If I close my eyes and try really hard, I can still smell her in it and feel her hair tickle my face when I nuzzle up to it. Over the past eight months, I have cried countless tears into its fabric. I guess it’s an outward representation of my grief.

Like Austen, I am attached to her blanket right now, because it keeps me attached to her. I know I’ll eventually be ready to place it in the cabinet for safekeeping. But not quite yet.

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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