Unnatural Order

By Laura Edwards

People die every day.

Three weeks ago, I read a eulogy inspired by a post on this blog at a memorial service for my grandmother, an angel in life who learned to fly on Christmas Day.

My grandmother’s cousin and close friend attended the service at the church that afternoon. Yesterday morning, her husband lost his battle with an aggressive brain tumor – the same kind of tumor that afflicts a main character in the novel I promised my grandmother I would finish one day.

When the azaleas bloomed in Charlotte last year, my husband and brother-in-law drove their father to New York to bury his mother – their last surviving grandparent.

My grandmother and I had a special relationship, and I will never stop missing her. But she was 41 years old when I came into this world. Though I never wanted her to get sick or pictured her that way until it actually happened, part of me always expected to outlive her.

Cancer is a horrible disease that can happen to anyone. But my grandmother’s cousin’s husband was not a young man.

My husband’s grandmother had five sons and many grandchildren.  She lived for 92 long years on this earth.

My little sister, Taylor, is 14.

Five-year-old Taylor seemed perfect – beautiful, intelligent, spunky. Healthy. The world was hers to conquer.

Six-year-old Taylor had some unexpected trouble with first grade math.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, Batten disease burst into our world and shattered it into a thousand little pieces.

Fourteen-year-old Taylor lives in a world that is always dark. She can’t learn like other kids. She has seizures. She loves to sing, but she can no longer talk except for a few words. Soon, she will be in a wheelchair.

Batten disease steals the lives of children.

Disney World

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

People often ask us why we bother with Taylor’s Tale – the non-profit organization we founded not long after Taylor’s diagnosis. They Googled Batten disease, or they know something about it from their relationship with us, and they wonder why we don’t just enjoy the time we have with her.

I do catch myself fighting too hard sometimes – I’ll realize that I’ve spent more time on my laptop than with the people I love in a given week – and when that happens, I know it’s time to pull back.

But we HAVE to fight. We know we can’t win every battle. We look at the fourteen-year-old Taylor and know that we likely won’t even win our own. But we hate Batten disease so much for what it’s done to my sister that we simply can’t sit back and let it win EVERYTHING. We know there are other children and families fighting their own battles and that there will be more in the future for as long as we don’t have a treatment.

We know Batten disease won’t quit.

If Taylor had a choice, she wouldn’t quit.

Neither will we.

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6 Comments On “Unnatural Order

  1. hopeforheather Reply

    What a beautiful post. I’m humbled by your post and I’m glad I found your blog. I’m assuming that Batten is a rare disease like Cowden’s Syndrome (which I have)?

    1. Member Laura King Edwards Reply

      Thank you so much! Yes-Batten disease is rare; it affects about 500 people in the U.S. and 2,000 worldwide. I have not heard of Cowden’s Syndrome-I will definitely check out your blog! Thanks again for reading. Thirty million Americans and 350 million people worldwide have a rare disease. Alone, we are rare, but together, we can make a huge difference!

      1. hopeforheather Reply

        Cowden’s Syndrome affects 1/250,000 people – have you been in contact with Global Genes Project?

        1. Member Laura King Edwards Reply

          There are multiple forms of Batten disease – Taylor has the infantile form. Collectively, Batten occurs in about two to four of every 100,000 births in the U.S. Our non-profit organization, Taylor’s Tale, has been in touch with the Global Genes Project, and I recently submitted a post to be published on their blog. They’re doing great things for the rare disease community. Best of luck to you in your fight! Please stay in touch.

  2. Katie Reply

    Thanks for this post, Laura. You all are always in my thoughts and prayers. You have a very special family … please give Taylor a hug for me!

    1. Member Laura King Edwards Reply

      Thank you so much for your continued thoughts and prayers and for reading. Taylor returns from Portland today; I will definitely give her a big hug from her friend Katie!

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