So little time has passed since my daughter’s death; only a lifetime ago

Today marks two years since my daughter Austen passed away from complications of Dravet syndrome. Two years since I last heard her voice or held her hand. Two years since I broke up a fight between her and her siblings, or had to go into their room to tell them for the thousandth time to stop playing and go to bed.

My world has completely changed in so many ways since that awful day two years ago, but in other ways, it’s the same.

We have a new home, I’m no longer teaching in a classroom, and my husband has a new job. I no longer have to make sure I have everything lined up and brought with me in case the seizure monster rears its ugly head during an outing, and I’ve started to sleep through the night, instead of waking up and thinking I have to check on Austen.

But I’m still Mom to her three surviving siblings, and I still wake up each day and have to go about many of the same routines I did before she died. I cook meals, chauffeur kids around, plan play dates, and mow the lawn. I simply do it all now without her.

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So little time for a lifetime ago

Suppose I could go back, just for a moment, to live in the memory of her coming into the kitchen and saying, “Mom, do you need a hug and a kiss?” I’d say, “Yes, sweetheart, that would be wonderful.” I’d accept her big bear hug and bend down to kiss the top of her head, letting myself breathe in the sweet smell of her hair. I’d hold her in that moment for as long as I could, if only God would grant that one wish. But it’s just a wish and, while I have faith that one day I will be reunited with my baby girl, today is not that day.

Austen might not be here with us physically, but she is with us in spirit. And there are reminders of her in every nook and cranny that make up our lives. Her lunch containers still live in our cabinets, and some of her clothing has made its way into my dresser. Her favorite blanket and her stuffed elephant live in my china cabinet. I still find medicine syringes in the most random places, in old purses or stuck in drawers — reminders of our Dravet syndrome journey and how the disease used to control every part of our lives.

Two years in, and I still can’t pass by an LOL Surprise doll in the store without hearing her voice begging me for “just one more,” and, at times, I even buy them to take to her grave and open with her. I leave them there to keep her company because even in death, a girl deserves her toys.

This morning, I looked out my kitchen window and saw a bluebird sitting on my back fence. We had a nest of them in a birdhouse on our fence the spring before Austen passed. Every day, she’d sneak over to the birdhouse and gently look inside, being very careful not to touch it and disturb its occupants. She simply wanted to watch and admire the mama at work, taking care of her babies. I whispered to the bird to tell my girl I said hello, and off it flew to its next destination.

Two years seems like such a short amount of time, but in other ways, it feels like a lifetime. Every day is a day further from the life I’d give anything to go back to, and, simultaneously, a day closer to seeing my girl again. I’m in the middle of two worlds that I long for so much, even as I try to stay present in the one I’m living in, with the people I love and who still need me here.

May and June have been hard for our entire family. We’ve taken it day by day and given ourselves (and each other) grace through the different emotions that grief brings. Sometimes we want to sit in silence; other times, we share stories and memories of Austen. In every moment, I’m grateful for the ones I still have with me, even though a part of my heart will always long to have her back. We all miss her in our own way, and we’re wading through this journey of grief together.

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