The Hardest Question

By Laura Edwards

When friends ask how my sister’s doing, I don’t know what to say. Explaining gene therapy comes more easily to me than answering that question. And I majored in English.

Taylor has “good” days and bad days. But Batten disease has forced us to adjust our expectations.

My sister has fought a brave, tough fight for many long years. She’s overcome a learning disability; gone blind; struggled with her speech; lost her voice; suffered seizures; gotten a wheelchair and a feeding tube. But she’s also learned to read and write in braille and walk with a cane and run two 5K races without the gift of sight. Most of all, she’s never forgotten how to laugh.

When friends ask how my sister’s doing, I think they want me to say she’s doing better. That would be the best answer for everyone, right? Why can’t it be true? Modern medicine is amazing. We almost always have a fighting chance, even if we’re battling the worst kind of cancer or coming back from a massive heart attack or stroke. And miracles happen every day.

But I’ve come to understand that my little sister is not going to get better. Because she has Batten disease, and it’s a ruthless monster, and we don’t have a treatment for it yet. I believe we will – and I believe Taylor’s Tale will be one of the reasons we get there – but we’re not moving quickly enough.

I haven’t been writing as many blog posts lately because I’m writing a book. I’m telling my story, and my sister’s story.

It has been a journey of self-discovery. I thought it would be hard to experience some of our worst days again, like the hot summer day we got the diagnosis. But reliving all of the happy times with my sister has been more difficult than I ever imagined. An endless movie reel plays in my head when I’m writing and driving and running and sleeping. I love remembering Taylor as she was before Batten disease robbed her of so much. The book has taken me back to snow days and pedicures and Disney World and movie nights. But I hate seeing those memories in my head and knowing that’s what they are – memories. I hate Batten disease for stealing my sister’s bright light. How can one little “rare” disease take so much?

I don’t want people to stop asking about my sister, even if I struggle to answer. I don’t want people to stop caring about this fight. Taylor wouldn’t have quit. And if we quit, there will always be another Taylor.

taylor in the snow

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14 Comments On “The Hardest Question

  1. Toni Clinton Reply

    Thank you for sharing this.

    1. Member Laura King Edwards Reply

      Of course! Thank you for reading!

  2. Debbie @ Deb Runs Reply

    It’s wonderful that you’re writing a book, and sharing Taylor’s story to those that haven’t found your blog.

    1. Member Laura King Edwards Reply

      Debbie, it has been an incredible experience, and I can’t wait to share Taylor’s amazing story of courage with the world on a different stage. Thank you, as always, for reading and for your support from afar.

  3. Annette Reply

    Laura, I came across your blog some months ago and think about and pray often for your family. Your sweet Taylor is blessed to have you as a sister but it’s easy to see how she has blessed all of your lives as well. I look forward to reading your book and admire your strong family so much. May God continue to carry you all through this.

    Prayers from Houston, TX
    Annette

    1. Member Laura King Edwards Reply

      Annette, thank you for your kind note and prayers. As you said, Taylor has blessed our lives. The world is a better place for having known her! p.s. I am running my next race for Taylor in the Houston area on World Rare Disease Day!

  4. lindaphillips4866 Reply

    Laura,I can’t wait to read this book. Keep on writing and reliving those memories so that Taylor’s and your story will be here forever to remind us about bravery and courage in the face of such a terrible disease.

    1. Member Laura King Edwards Reply

      Thank you so much, Linda. I will never stop sharing Taylor’s story!

  5. cas79 Reply

    I really want to know when the book will be finished and what it is called as I definately am going to read it! So sorry for you and I hate this disease so much. I will try to do my best and help to spread the word about it and hopefully will be able to find some People willing to donate into Research in order to find a cure soon, as this disease has to be stopped immediately. No more children should die.

    1. Member Laura King Edwards Reply

      Thank you for writing! I am making great progress and hope to be finished in the near future. Thank you so much for helping spread the word about Batten disease and other rare diseases. You are right – no more children should die. A disease may be rare, but hope should never be.

  6. Debbie Dovel Reply

    Laura, I know exactly how you feel. We lost our son, Chad, to Juvenile Batten’s a year ago on Feb. 9, 2014, and not a day goes by that the memories of all the years of his life don’t constantly run thru my mind. I’m trying to cherish the good memories & learn from the hard ones. I don’t call them “bad” memories because if Chad is in them, they can’t be bad, just “hard”. I cling to each memory in order to keep him alive in my heart, just as I know he is now alive, healthy, & whole in Heaven with eyes that can see, legs that can walk, and a voice that can finally sing again as he loved to do before Batten’s took it all away. I follow your stories about Taylor and my heart goes out to you and your family, as I remember our journey thru so much of the same things. I’m always praying for a cure and hoping it will come in time to help so many children. However, it will be too late for some, but rest in the assurance that they will be healed in a far better place than here, and if we abide in Christ, we will see them again, and won’t that be a sight to behold? I know that Chad is waiting there to welcome every other child with Batten’s into his glorious new home. May God be with you, Taylor, & your family as you journey thru the tough days ahead!

    1. Member Laura King Edwards Reply

      Debbie, thank you for reading and for sharing your story. I remember your son, Chad. It’s amazing how much “smaller” the world becomes when you’re fighting a rare disease! I understand exactly what you mean when you say that memories of better times are not “bad” – just “hard.” The images I have of a happy, healthy, smiling Taylor are the most beautiful things in the world, and I’ll never let go of them. Ever. Best to you and your family, and thank you again for writing to me.

  7. Valerie Reply

    There are days it’s hard for me to finish reading your posts because they hit so close to home. My daughter has an as yet unnamed progressive neurological condition similiar to early onset Dystonia with Parkinsonism. She too has lost the ability to eat, walk and talk. You capture your feelings in words so well I look forward to reading your book too.

    1. Member Laura King Edwards Reply

      Valerie, I am so sorry to hear about your daughter. I wish you and your family the very best; you will all be in my prayers. Thank you for reading our story.

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