Learning anew to find joy in the midst of sorrow

Losing my daughter Austen, who had Dravet syndrome, was the hardest thing I’ve ever gone through in my life. There’s no way around that. It doesn’t matter if you know your child is sick, if you know there’s a chance that they’ll die, or if you’ve experienced death on a smaller scale throughout your life. Nothing could prepare you for the loss of your child.

I’m not the first one in my family to have lost a child. I have two aunts and a cousin who’ve all had to bury one of their children. In its twisted way, this reality helped me when it came to losing Austen. That’s because I had people who I knew loved me, whose heart was breaking watching me go through what they’d suffered as well. These family members held me in the days after Austen’s accident, but they also didn’t hesitate to give me some tough love.

They told me I would want to wallow in my sorrow. That there’d be many days ahead when I wouldn’t want to get out of bed, that I wouldn’t want to be here. But even in my darkest days, I’d need to wake up every day and make a choice to not only survive, but also to live. They reminded me I had three other children (Addisen, Atlas, and my bonus daughter, Grace) who were relying on me to show them we could get through this loss. I was told that my children needed me more now than they ever had.

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I didn’t think much about their words until a week or two after Austen’s memorial. The first couple weeks after she died I was almost numb. So many things were going on, with so many plans to be made, that I couldn’t focus on my feelings. But after the memorial was over, after family and friends dispersed back to their homes, and after my husband had to go back to work, I found myself sitting alone for the first time in weeks. That’s when a greater sadness started to seep in.

As much as I wanted to, I knew I couldn’t let myself give up. My family was right; my children were depending on me. I had to figure out a way to not only get through my days, but also to find joy again somehow.

You might be thinking that I’m crazy at this point. Why would I ever even want to find joy again after losing my precious baby?

Moving forward

It goes back to my other kids. I wanted to see them smile, really smile, again. I wanted them to enjoy their lives and not spend them forever in the shadow of their sister’s death. And I wanted them to feel joy. But I also needed to be able to find joy within myself and experience it with them. I had to be able to celebrate their milestones, whether weddings or softball games. I wanted my kids to know I loved them enough to continue living with them without letting my entire world stop after losing her.

The first thing I did was get on an antidepressant and put all of us into therapy. And both have helped tremendously as we’ve coped with our loss. But the decision that helped me the most was to take on a much smaller task: a daily walk.

At the beginning of the school year, I found my nerves were hanging on very short threads, not the best situation when you’re teaching 3-year-olds. So I decided to use the scenic walking trail behind our school each day during my lunch period. Thirty minutes of walking was the perfect thing to help me recharge and be a better teacher during the second half of our day.

Sometimes I walk and listen to an audiobook or a sermon, and sometimes I walk silently, hearing only the crunch of acorns under my feet or the rustle of squirrels in the trees. I use this time to pray and reflect and talk to God and Austen. Sometimes I use this time simply to breathe in fresh air.

In his memoir “Surprised by Joy,” the writer and theologian C.S. Lewis recalls that it was his childhood friend Arthur who helped him to find beauty in the little things. “But for him, I should never have known the beauty of the ordinary vegetables that we destined to the pot.”

Although I haven’t yet been able to find a state of ecstatic joy since Austen passed away, my walks have reconnected me to the beauty of the little things. Small, ordinary occurrences keep me going. The beauty in life and living.

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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