Sunday, December 16, 2012

Empty Christmas Chair--another holiday without my daughter


Empty Christmas Chair--another holiday without my daughter

My younger daughter Elizabeth would have turned 23 today, December 18, 2012.

On her birthday seven years ago, I cried in thankfulness that she managed to be home with us for yet another Christmas. Expecting Elizabeth birth, due to be on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”

The neonatologist said, "Your daughter's brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.

Why hadn’t my OB/GYN warned me about this?

While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, the Book of Psalms, and a couple of prescription sedatives! We were eventually able to move ahead as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers, and could not speak or hold up her head, Elizabeth was very happy and loved going for long car rides—especially to look at Christmas lights. She also enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!”

With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone.

While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

Now, as I prepare to celebrate my seventh Christmas without her, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, old formerly homeless dog Riley, and watch us decorate. Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”

Now, I can only visit with Elizabeth in my dreams, but to feel her presence on a more continuous basis, I share her life with others. After speaking about her at the first international Congenital CMV conference held at the Centers for Disease Control in Prevention (CDC) in Atlanta, GA, scientists from all over the world approached to thank me for inspiring them to continue their work.

Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"

Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV. I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch. In the back of the book, I include CMV prevention and treatment tips from the country’s leading CMV experts.

Please help prevent disease related birth defects by reviewing the CDC's fact sheet on preventing infections during pregnancy available at: http://www.cdc.gov/ncbddd/pregnancy_gateway/infections.html



If a person would like a portion of the proceeds to be donated to CMV research and parent support, the soft cover version can be purchased through the National CMV Disease Registry at: www.unlimitedpublishing.com/cmv

No comments: