The Book That Spoke to Me as the Parent of a Boy With CHD


March is National Reading Month and PCHA’s Marketing Coordinator Jessica Chenevert talks with us about one special book that holds a special place in her heart.

When I bought this children’s book, I had no idea that the first time I would read it to my son, Bear, I would be brought to tears. Never in my life has a book made me cry. The book is titled, “You’re Here for a Reason,” and it’s written and illustrated by Nancy Tillman. I decided to buy it, because I loved another one of her books, “On the Night You Were Born,” which Bear had received as a gift for his first Christmas. Not only does the book have beautiful rhyming phrases, but it is written in a way that floats off the pages and can truly relate itself to your life. In my case, the words reached through the pages and spoke to me about Barrett’s journey with congenital heart disease. The book, as far as I know, has no relation to heart disease and wasn’t written with a heart kid in mind, but every word I read applied to it perfectly.

young boy sitting in an armchair holding a book
Barrett

Barrett is here for a reason. Every one of us is. Nancy shows her readers how each of us fits into life’s big picture and how this world would simply be incomplete without each of us in it. As we sat there after reading the book, I held my sweet, strong warrior and rocked him back and forth and thought it was such a perfect gift for children and families living with CHD.

One of the fun aspects of my job is managing PCHA’s social media and creating inspirational graphics to share with our followers. Naturally, I created one using a passage from one of these great books and posted it on social media. To my great surprise, the author herself engaged in the post. I immediately reached out to her on my personal account about my love for her books and sent her a picture of Barrett.

"You're here for a reason, you certainly are. The world would be different without you, by far. If not for your hands and your eyes and your feet, the world, like a puzzle, would be incomplete." -- Nancy Tillman

Of course, she responded to those also, and I was overjoyed. A small interaction, but one that would stay with me. Little did I know it would not end there. When I had the privilege of being honored the Heart Hero of the Year Award at the Congenital Heart Gala in Milwaukee, our Director of Programs, Amy, knowing my love for Nancy Tillman books, reached out to the New York Times best-selling author so that when I walked up to accept the award I would also have a copy of “You’re Here for a Reason” made out to Barrett, complete with a signature.

Giving parents words that can match the feelings they have for their children is Nancy Tillman’s goal in creating these books. Before I even knew about that, I had felt it. I had already decided it would be the book I wanted to gift to other amazing little warriors and their parents. Just one month earlier, I had given it as part of a gift from Barrett to his buddy Ezra on his 2nd birthday. Now, Barrett and Ezra were born roughly two weeks apart, they had all the same newborn clothes, underwent surgery at the same hospital and were both living with CHD. Ezra’s battle had been particularly rough, but Ezzie’s mom and I liked to call them twins, because even with different defects, different struggles and ultimately different outcomes… they were brothers on this journey.

young boy with a book next to him
Ezra

This book has a special place on Barrett’s book shelf and in my heart. Each time we read it, I hope he knows how truly amazing and strong he is and how much he is loved.

Note from the Author:

Dear loving parents,

My own grandchild was born with a hole in her heart, so I know much of the struggle that you are going through. She is well and happy now and that is what I wish for all your precious children. I wrote You’re Here for a Reason to speak from your heart. I so dearly hope it does. Your child is miraculous.

Blessings,

Nancy Tillman


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