This article was written by Christa Sumwalt for the Random Acts of Kindness Sept/Oct 2013 newsletter.
The pediatric cardiothoracic intensive care unit was a maze of machines, beds, and babies. It was hard to believe that doctors could even operate on the tiny hearts of the babies. In October 2004, one of those babies happened to be mine. In a routine ultrasound during the previous summer—you know, the one where parents usually listen with delight as they are told the gender of their baby—my doctor told me there was something wrong with my baby’s heart. The next couple of months were a blur. By the fall, I was at a congenital heart center far from home waiting for baby Nate to arrive.
Nate was born on October 5, 2004. Two days later, he had a pacemaker implanted. Four days after that, he had open-heart surgery, what was supposed to be the first of three surgeries to make his hypoplastic heart function as normally as possible. While most parents scoop their children into their own arms, our team of nurses carefully arranged vent tubing, IV tubing, and chest tubing just so I could hold my baby boy. Life was anything but normal, but for my husband and me this was normal. This was normal for us and the many friends we made at the hospital, the “heart moms” and dads who were also living such a surreal existence.
Every once in a while I could hear a cart rolling, and I would look up. It was The Giving Library, a little library on wheels. The cart was nothing like a traditional library. We could pick out any book we liked and keep it. We picked out many books and read them to Nate in the hospital. Some were little board books. Others were the books that we all read as kids. I enjoyed the ritual of The Giving Library and receiving the books. And I especially enjoyed reading the books to Nate. In a world where little ones were waging such spectacular fights for life, where many of us couldn’t hold or even feed our children, we were able to read to them. Reading these books allowed us to be a little bit normal. At least Nate could hear our voices and our words.
Nate was discharged in late October, and we returned home. At home, our lives consisted of around-the-clock medication schedules, NG tube feedings, and doctor’s appointments. But they were also filled with wonderful memories of Nate like his cute frog outfits and his frog-themed toys. I would smile when our cat, who was almost 4 times the size of our son, would saunter over for a short visit.
Nate died at a therapy appointment in December due to complications of his heart defect. All of a sudden, my little baby with round brown eyes, cute little lips, and soft brown hair was gone. There are no words for this experience. No, I really mean it. When a spouse dies, you are a “widow” or a “widower.” When your parents die, you become an “orphan.” But when your child dies, there isn’t a word for the parents left behind. Not one that I know of, at least. I was a mom without a child. One of those in the group that has no name.
The first anniversary of Nate’s death was coming, and I wanted to do something to remember him by. Nothing big, but something that could help others and to honor his short little life. I remembered The Giving Library. I decided to do a book drive and would donate the new and gently used books to our local hospitals. I put the word out slowly. I posted to my Carepage. I sent e-mails out. I asked family and friends to give books. That first year, we collected only a modest number. Each book had a label with an animated frog (a reminder of all the quiet frog toys and clothes still folded neatly in Nate’s old room) on the inside cover of the books. And we took them to the hospitals.
The second year, we did it again. A local journalist picked up on our story and wrote an article for our newspaper that ran in early December 2006. We found bags of books on our front porch. Complete strangers read our story and sent us books. Hundreds of books. A friend asked if her daughter’s girl scout troop could do a book drive for their service project. More hundreds of books. We loaded the books on carts, just like the ones that we once heard rolling down the hospital halls, and hauled them into our local hospitals. All of this kindness from our community from those who heard our story, and they listened. And they took a moment to give. To help.
The book drive has continued through the years. Thousands of books have been donated to hospitals in memory of Nate. In the early years after Nate died, the books served as tangible reminders of Nate. It was as if putting his name on the inside jacket of the book was a literal way of keeping his name alive. As the years progressed, I have become more aware that his name and his memory will always be alive, but not because of the books. His memory lives in the daily lives of those who loved him and knew him, whether they ever met him or not, whenever they took the time to give something precious to a child they would likely never meet.
Fast forward to fall 2010 when Nate would have been almost five years old. I now held in my arms my 3 year-old son adopted from Russia at 13 months of age. Andrew was at the children’s hospital for an MRI. As we sat in the waiting room waiting to be called, we settled in at the play area, fully equipped with toys and books. As I sifted through the books, I opened one small book. There, on the inside cover was a familiar book label with a picture of a frog and Nate’s name. I showed the book to Andrew and, of course, I was met with the look of a three-year old who just couldn’t grasp my excitement. That was a sort of full-circle moment, a moment when I realized that through the pain and tears, that life does go on. The kids in the hospital might never know our story but Nate’s legacy lives on.
We continue the book drive every year. This October, nine years after Nate’s birth, we will load up our car and deliver boxes of books to the hospitals. Maybe other families can take comfort by reading these books to their babies, just like we did so many years ago. We hope so.