By Laura Edwards

We started tonight around the table at my parents’ house. Dad picked up takeout from our favorite Italian restaurant. Mom made a fresh salad and baked brownies. But for the faraway look in my sister’s eyes, we could have been any other family sharing a meal on a weekday.

But we never made it to dessert.

Batten disease steals everything, especially the things you love. My sister loves music and her family. Our presence tonight and soft music playing on speakers in my parents’ kitchen proved to be too much for her system to handle.

That’s why, before we ever made it to Mom’s brownies, we found ourselves huddled around Taylor on the floor as she suffered a series of seizures. As I watched Mom and my husband and brother cradle my sister and attempt to calm her down, I recalled a long-ago day that we all held each other on the floor of my parents’ bedroom upstairs, struggling to understand the news we’d just received.

Our lives would never be the same.

8 Comments On “Emptiness

  1. Dawn Serbanic Reply

    My thoughts are with you and your family. I’m glad I get to see Taylor tomorrow. Wish there was more I could do and/or say.

    1. Member Laura King Edwards Reply

      Dawn, thank you for your support. We feel so lucky to have you!

  2. Linda Kerns Reply

    There are no word’s to express my sympathy for you and your family,except that I understand the devastation this disease can bring,my niece Cassidy Sneed also has this Horrible battle she is fighting,and it really does rob you of what other’s seem to take for granted,hold tight to every precious moment,pray,have faith,and may the lord be with you and bless your family,it takes a special person to fight this battle and it will take all of us out there to win the war…..God Bless,Thought’s and Prayer’s

    1. Member Laura King Edwards Reply

      Linda, I am so sorry to hear that your niece Cassidy has to fight this battle as well. Thank you for your kind words of support. What you say is true; we must continue to pray for kids like Taylor and Cassidy, and we can never, ever stop fighting.

  3. Dawn Serbanic Reply

    Oh thank you Laura, that means a great deal to me. To know I make some difference is why I do what I do. Your family inspire me daily to appreciate what I have and be a better person!

    1. Member Laura King Edwards Reply

      You are so welcome; you ARE making a difference!

  4. Jane Grosse Reply

    Laura, I had such a nice visit with Taylor recently. She was having a good day. She gave me a beautiful smile that I have carried with me in my heart and it was wonderful to be in her company.

    1. Member Laura King Edwards Reply

      I’m so glad to hear that, Jane. We live for the good days! Thank you for spending time with my sister and for helping bring that beautiful smile to her face.

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