I’m coming to terms with another heartache

My family moved to Colorado when Austen, my daughter who last summer passed away at age 9 from complications of Dravet syndrome, was just a year old. We moved to get her access to medical cannabis there, and while I don’t regret that choice, it was hard to take my children away from their family and friends in our small Texas community.

Because of that, we made the 12-hour trek back to Texas often, and almost every time, I’d stay with my aunt and uncle, my mom’s older sister and her husband. They played a huge part in raising me, and my uncle Jerry was my entire world. My childhood was a bit chaotic, but he was always a calm place — my refuge, if you will. It was their house I went to after Austen had her first seizure.

Because of these frequent visits and my move into their home after my divorce, my children have always been close to them as well. Austen loved her uncle Jerry so much that she’d tell everyone who asked, “You can be my friend, but I’m sorry, my uncle Jerry is my best friend.”

And he was.

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Many a morning Austen and Uncle Jerry would play the “Sneaky Sneaker” game, in which Austen would sneak around the corner of the living room and hide behind Jerry’s recliner. She’d then sneak her arm up over the top and tap the top of Jerry’s head. Jerry would say, “Now what is that? Could it be the Sneaky Sneaker?” and Austen would just giggle until she couldn’t handle it anymore and then climb onto his lap. He’d ask her if she had a good sleep, cuddle her, and send her off to breakfast.

I loved seeing this friendship and love develop between two people I loved so much. My uncle Jerry had always been my home, and now he was becoming hers as well. But Jerry had been sick for a long time and had been getting steadily worse for about a year before Austen’s death.

The day after she died, he was wheeled out to the kitchen to sit with me, and he held my hand and let me cry into him, just as I did when I was a little girl. I could see that his pain was twofold, just like mine is when I see my own children’s grief. It hurt him to see me in so much pain, but he was grieving for Austen just as much. I think I knew that day that he’d soon be gone as well, that he wouldn’t be able to continue living without Austen beside him.

I was right.

Another goodbye

My uncle Jerry passed away right before the six-month anniversary of Austen’s death. The man who’d held me up through all of my sorrows and sat with me through her countless seizures was now gone.

I admit my first emotion wasn’t heartache or shock, but anger. It felt like this man, who’d been the steady constant in my life, who’d supported me through so much, had abandoned me when I needed him most. It took several months, and quite a bit of therapy, to realize that wasn’t the case.

The truth is, while I felt I might not be able to move on without Austen, my uncle Jerry really couldn’t. I believe he was already so sick that losing someone so special just weakened him even more.

In his last days, Uncle Jerry often talked about who he’d see when he reached the other side. He talked about his grandmother and his friends, but most of all, he talked about Austen. He talked about her in times of delirium and lucidity. He once told me that Austen would be the one to get him when it was finally his time to go.

I’ve always heard stories of people at the end of their lives seeing and talking to loved ones who’d passed on before them, but I wasn’t sure I believed in it. But something tells me that if it’s true, Austen was the one to help Uncle Jerry cross over from this world to the next. It probably involved a game of Sneaky Sneaker and a lot of giggles.

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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