The Promise of Hope From Tragedy

TJ Amber lived a short but joyful life. As an infant he was diagnosed at Nationwide Children’s Hospital with Leigh Syndrome-a rare, inherited neurological condition that has no cure. Although he lived just 14 months, TJ was an inspiration to those around him, especially his mother Carole, who turned their family’s tragic story into an inspirational children’s book, “The Gift of the Ladybug.” Released on January 28th (TJ’s birthday), the book launched as the #2 Hot New Children’s Book on Amazon.com.

Anything but sad, “The Gift of the Ladybug” celebrates love, joy and acceptance regardless of the circumstances. We had the opportunity to connect with Carole who gives us the “behind the scenes” story of TJ and this wonderful book.

When did you first get the idea for the book?
This story came to me in a flash during one of my darkest moments. It was a cold, dark, and rainy evening in December. We were driving home after hearing the doctor say, “Your son may not see his second birthday.” I was reeling, frozen in a catatonic state, and in agonizing pain. Suddenly I began to see horses and ladybugs floating in my head. I watched as the ladybug asked the horses why they were crying, and I heard the ladybug say,“But I don’t know how to be a horse. I only know how to be a ladybug.” It was these words and the peace that they brought that allowed me to find relief in that harrowing moment. In the days following that car ride, I put pen to paper and wrote The Gift of the Ladybug for TJ. I gave it to him for Christmas and was able to read it to him countless times. It’s been over two years since TJ passed away, and my husband and I decided to publish this book in hopes that it would help other families.

How did writing the book help you cope with the news of your son’s illness?
Writing the book helped us cope with TJ’s illness in more ways than I count. When I would feel like I couldn’t go on, I would tell myself “TJ is exactly where he is supposed to be, and he is okay” or “If TJ can do this, so can I” or “This is how TJ was made. I get to have TJ, I have to accept this disease.” In a way, the messages we took from The Gift of the Ladybug saved me and my family.

What is the message you want people to take away when they read this book?
The messages of this book are inspired by TJ’s remarkable way of being.
• You are wonderful exactly as you are
• Everything is exactly as it is meant to be
• With acceptance, comes peace
• Unconditional love is one of life’s most precious gifts

What advice do you have for other parents who may receive similar news about their child?
I’m not sure that I am qualified to give advice, but I’m happy to explain what helped me.
What helped me the most was allowing myself to be exactly where I was emotionally. I learned that giving myself space was vital to getting through my darkest days. If I needed to cry, I tried to find time to cry. If I needed to scream, I would find a place to scream in private. If I was angry, I would hit my punching bag. My friend gave me the advice to install a punching bag in my house once we found out the news. I highly recommend it! I also journaled, walked and talked out my emotions when possible. I did my best to take care of myself on my own time, so that I could be present and cherish TJ when I was with him.

As far as TJ’s care, educating myself and not being afraid to ask lots of questions was helpful. In the end—I think each person is different and has his/her own way of dealing with this kind of news—so listening to yourself is probably the best advice I could give.
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Donna Teach
Donna Teach is Chief Marketing & Communication Officer at Nationwide Children's. Her job is to help the hospital feel "connected" – Connected to each other, connected to our patients and their families, referring physicians, the community and the world.

2 thoughts on “The Promise of Hope From Tragedy

  1. alicia lawhun on said:

    my son was diagnosed in august 2011 with crohns disease. i was devastated with his diagnosis because i have a friend with it and i see the pain she goes through and didnt want this for my son. i know there is no cure and he may go through many surgeries but he knows he can always talk to me about anything. tj’s short life is not in vain. his story will help others realize that life is precious no matter how short or long it is. god bless u tj and ur parents for sharing ur story with us.

  2. Michelle on said:

    Carole,
    I absolutely loved taking care of TJ, he was the light of my day & the best patient a nurse could ever ask for. I’m privileged to have know TJ, my daughter feels the same. No child/patient has ever touched me the way TJ did, he was very special. Every time I see a ladybug he is the first thing to cross my mind, those joyous times & happy memories will never leave me. I keep a ladybug on my dresser to this day. You & Troy are two of the strongest people I have ever met. Someone I know is going through a similar diagnosis & I can only pray they understand & cherish every day with their child the way you did. I hope the best for your family & TJ will always be in my heart. Here’s to wonderful memories that last a lifetime!
    Sincerely,
    TJs nurse (Michelle)

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