The Empty Christmas Chair 2013--holidays without my daughter
by
Lisa Saunders
Like many who have lost a loved one, I tear up this time of year when I hear Bing Crosby sing “I'll Be Home for Christmas" on the car
radio. I cry for my daughter Elizabeth would have turned 24 on December 18, 2013.
Expecting Elizabeth, due to be born 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 I 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, some Valium, and the Book of Psalms. We were eventually
able to move forward 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 unable to speak or hold up
her head, Elizabeth was very happy and loved going for long car rides. She
especially enjoyed going to 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’s body 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.”
As I prepare to celebrate my seventh Christmas without
her, it was with some heartache that I brought down the holiday decorations from
the attic. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.)
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!”
Although I miss Elizabeth, I’m glad she is free from
suffering, glad she is safe in her new, Heavenly home. When my time comes, I
will see her again. My father wrote a fairytale that I found very helpful after Elizabeth died. I have made it available as a free e-book, Surviving Loss: The Woodcutter's Tale.* It includes comments on grieving from Julie Russell, a licensed clinical social worker, and heart-felt illustrations by Elizabeth's aunt, Marianne Greiner. Download your free e-book in several different formats at: https://www.smashwords.com/books/view/283862
The Only Thing I Can
Do for Elizabeth Now
Since Elizabeth no longer needs my care, the only thing I
can do for her now is to care for those not yet born—to prevent them from
suffering as Elizabeth did. I do that by speaking and writing about congenital
CMV prevention.
After presenting her life at the international Congenital
CMV conference held at the Centers for Disease Control (CDC) in Atlanta, GA, in
2008, 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 light-hearted memoir about my girls and their series of dysfunctional pets, Anything But a Dog! The perfect pet for a girl with congenital CMV, which culminates with the unusual account of how a big, old homeless dog found his way to Elizabeth's couch and of their quiet bond. I also try to interest the media in Elizabeth's story and how her death could have been prevented (see one newspaper interview at: What every pregnant woman needs to know.)
The Day's Grace magazine featured Elizabeth's story and the lack of congenital CMV prevention education on December 18, 2013--her 24th birthday. It is available for viewing at: Loss and love: Author raises awareness about preventable birth defect
Short news clip about congenital CMV and my daughter Elizabeth and her dog at: USA 9 News clip)
I am, however, excited to report that in 2013, one state, Utah, has finally made congenital CMV education mandatory through their Health Department. See: http://www.health.utah.gov/cshcn/CHSS/CMV.html
Many who work to prevent the kind of suffering Elizabeth endured, in addition to mandatory CMV education, are proposing pregnant women get a blood test to see if they have a primary infection. One benefit of that is the current nationwide study to test the efficacy of giving CMV infected women CMV antibodies. See: Current CMV Trial--need participants
What can you do to prevent unborn children from suffering as my Elizabeth did?
You can:
1. Tell your friends and family how to prevent congenital CMV infection (namely through refraining from kissing their toddlers around the mouth and through careful hand washing when handling their saliva and urine). See http://www.cdc.gov/cmv/.
2.
3. Share information about my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, which is available for free viewing (the first several pages) on Amazon by clicking on the "LOOK INSIDE" feature (if purchased through the National CMV Disease Registry, a portion of the proceeds go to parents and CMV research.) Reviews of my memoir include: "Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge...Beyond the laughs about a dizzying pet search, Saunders' dog tale is about a mother who candidly reveals her family's burden, love, and acceptance of a daughter born with severe disabilities—and the people, and pets, forever touched by her life." Tonia Shakespeare, Rockland Magazine
"Sheds light on a disorder that is preventable and not talked about enough. If you're an animal lover, you'll love the critter tales as much as the special-needs storyline...really lifted my spirits." Terri Mauro, About.com
4. Helps others who work to prevent CMV. You can adjust the following letter to suit your interest/concern:
5. Share the following congenital CMV information and prevention sources with the media and/or doctors:
4. Helps others who work to prevent CMV. You can adjust the following letter to suit your interest/concern:
I am the parent representative of the Congenital CMV Foundation, have spoken at international CMV conferences co-sponsored by the Centers for Disease Control and Prevention, and am the author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV".
My daughter Elizabeth was born severely disabled from congenital CMV. I had a miscarriage three months before she was conceived and no one suggested I get tested for CMV before getting pregnant again.
If you work to promote the need for more participants in your study, the most recent article published about my daughter's life with congenital CMV and my work to educate the public was in the December 18 issue of Grace magazine.
See: Loss and love: Author raises awareness about preventable birth defect
See: Loss and love: Author raises awareness about preventable birth defect
You can see Elizabeth and my work to raise awareness in this short USA 9 News clip.
If you need any help promoting your work, please let me know what to do.
“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
For more information about congenital CMV and how you can protect your pregnancy, contact:
Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.
Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov
Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.
*Surviving Loss: The Woodcutter's Tale (it also available as a paperback on Amazon)
This booklet, a grandfather’s touching fairy tale, is illustrated with heart-felt simplicity. It’s a story that soothes the aching hearts of children and adults alike, as it reveals the process of healing after the death of a loved one.
The afterward, written by a psychotherapist, seeks to help individuals understand the grieving process so they can return to a life with purpose and meaning. Further insight is provided by a mother who lost her 16-year-old daughter. She shares the ways in which she is trying to move forward to honor the memory of her child.
This message of hope enables readers to begin speaking of their own losses, whether by discussing the fairytale or identifying with the mother’s experience. The portion on understanding and coping with the natural process of grief gives individuals tools for healing.
Surviving Loss: A Woodcutter’s Tale is ideal for anyone who has experienced loss and provides professionals with an invaluable resource for assisting the bereaved.
The afterward, written by a psychotherapist, seeks to help individuals understand the grieving process so they can return to a life with purpose and meaning. Further insight is provided by a mother who lost her 16-year-old daughter. She shares the ways in which she is trying to move forward to honor the memory of her child.
This message of hope enables readers to begin speaking of their own losses, whether by discussing the fairytale or identifying with the mother’s experience. The portion on understanding and coping with the natural process of grief gives individuals tools for healing.
Surviving Loss: A Woodcutter’s Tale is ideal for anyone who has experienced loss and provides professionals with an invaluable resource for assisting the bereaved.
ccurs during a woman’s pregnancy, the baby can become infected before birth. CMV infection before birth is known as “congenital CMV”. When this happens, the virus gets transmitted to the unborn infant and can potentially damage the brain, eyes and/or inner ears.
