Monday, November 21, 2011

10 years ago, an angel got his wings

Zacary Bentley
b. June 11, 1997 - d. November 22, 2001

Zac (age 3) with his beloved mom
Ten years ago on November 22, Zacary Bentley, aged 4-1/2, left this earth. We became friends with Zac's mom Laurie through our work on the NICU Family Advisory Board at Legacy Emanuel Hospital and together, with a number of other parents, we launched the nonprofit parent support group Precious Beginnings. Zacary had VACTERLS syndrome, which among other things included a heart defect. Throughout his short lifetime, he had many surgeries to try to replace his defective mitral valve.

Laurie made an immediate impression on me when she told Zacary's birth story at a Family Advisory Board meeting. A vivacious woman with a head full of gorgeous red hair, Laurie is one of the most passionate, dedicated moms I've ever had the honor to know. When Zac was born (a miracle in itself after years of infertility, countless lost pregnancies, and a doctor who told her that her pregnancy with Zac had ended) and they discovered his heart defect, Laurie got right up out of her hospital bed at Meridian Park Hospital and followed Zacary to Emanuel Hospital. While there, she did not leave his side. The hospital staff had to find her a room; they had no choice. I was stunned by her brazen confidence and advocacy of her motherhood of her who allowed some of the less-compassionate NICU nurses to make me feel about an inch tall. (When you're a parent in the NICU, you typically feel like a visitor, not a parent. She refused to be treated as anything less than Zacary's parent.) Laurie was (and is) a force to be reckoned with...Zacary could never have had a fiercer advocate and mother bear to see that his needs were met.

Not only did Laurie advocate fiercely for Zacary, but when he was older she volunteered hours upon hours in the NICU, supporting other families. She was a lifeline for so many families who needed to cling to any scrap of hope during their darkest hours. Even now she continues that support, online and through the nonprofit organization Zacary's cardiologist started, Sanctuary Camp, to help children with serious illnesses.

Zacary and Christopher became friends, as they were only a year apart and in preschool days, children often become friends with their parents' friends' children. Both were very small for their age and sensitive little boys.

At the wedding of Scott and Amy (my sister's childhood friend,
who in this small world happened to be a home visit nurse for Zacary)
Added to the duo was Calder, son of more Precious Beginnings/NICU volunteers Doug and Catherine. As the only non-NICU kid of the three, he looked strapping in comparison to the older boys. During fall 2001, Zacary began attending preschool with Calder, and he loved it.
Calder, Chris, and Zacary

The three amigos

With the boys and Laurie at Enchanted Forest for Chris' fifth birthday, August 2001
Zacary loved drawing, music, ladybugs, and his friends--small and large. Most of all, he absolutely adored his mom and dad, and the feeling was completely mutual. During summer and fall, Zacary was not feeling that well. I remember meeting them once at Washington Square for lunch, and he seemed to be very tired. His heart was working so hard.

On Thanksgiving Day, Zacary became ill and his parents rushed him to the hospital. After a maddening number of hours during which his parents fought to have him admitted to the PICU (but the ER at the time was not well set up for pediatrics--and the best doctors were off for Thanksgiving), he finally got the medical attention he needed, but it was too late to save him. To his parents' horror and shock, Zacary died that evening...ironically, of an enlarged surprise to those of us who knew him. He had a huge heart.

I will never fail to think of Zacary when our phone rings late at night. The NICU nurses called us in the middle of the night because they were concerned that Laurie and Derek had no family in town. We called my parents, who came over to stay with Christopher, and headed to the hospital. We also called our mutual friends Doug and Catherine, and Doug joined us. Doug and Catherine's son, Parker, had been born at 23 weeks gestation and lived for only a week, so they knew only too well what it was like to lose a child.

Zach and Chris in the Emanuel Children's Garden
(Photo by Laurie Bentley)
I feel deeply blessed by that horrifying night in the PICU, when Laurie and Derek cradled the body of their precious son, clinging to him and mourning his tragic death. That might sound strange to say, but I do feel blessed because we were there in such a sacred, primal moment. Doug was fantastic that evening, and I know Laurie and Derek were grateful for his support--I've always maintained that support from someone who's been through a shared experience is irreplaceable.

Each one of us who knew Zacary grieved his death deeply--he was truly a little angel on earth for a short while. To this day, when Chris hears a John Denver & the Muppets song (on their Christmas album), in which the ending line is "Merry Christmas little Zachary," he gets choked up and upset. No child should have to get to know grief at such a young age. No parent should have to grieve the loss of their child. 

Photo by Laurie Bentley
We haven't seen Laurie for many years; she lives on the other side of the country now. We're different in many ways--for example, she's conservative, and we're liberal. But we have an unbreakable bond--and that is Zacary. Zacary lives on in all of our hearts, and through his life and death, many of us formed lifelong friendships. He taught me how precious and fragile life is...and how important it is to honor those people who have died--whether they be children or adults. The people left behind need to know we remember their loved ones.

He continues to remind us of his presence through the little things...a song, a poem, a story, a tale of another child with a heart condition, or a ladybug.

We will never, ever forget you, sweet angel Zacary. We miss you so much!


  1. Oh, sweet Marie, I couldn't be more touched ~ you captured Zacary's story so beautifully. A sleepless night, and I opened this story, streaming with tears and a smile. Thank you for taking the time, to not only care, and be there for me, as you always have, but to capture so much of Zacary so eloquently. Yes, Zacary got his wings 10 years ago today, and as someone very close to Zacary wrote ~ these wings caused Zacary to soar into heaven, soar into our hearts ~ and cause each of us to soar a little bit too. Thank you and your treasured family for being such an intricate part of Zacary's beautiful life. Love Zacary's Mama

  2. A beautiful post for a boy and his mother who have touched so many lives. As you said, Laurie continues to help so many people, and I am sure Zacary is at her shoulder helping her every step of the way.

    We love you, Zacary and Laurie!