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Loving My Christmas Girl Born Disabled by Congenital CMV
Expecting our second child, due to arrive on Christmas Eve 1989, was a joyous experience. What a Christmas present! But December 18 is the moment of Elizabeth’s birth. I felt a stab of fear. My immediate thought was, “His head looks so small — so deformed.” Before he was twelve hours old, I found out why.
When the neonatologist walked into my room the next morning, he said, “Your daughter has profound microcephaly — extremely damaged throughout her brain. 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)—a virus that may cause no symptoms for the mother, known as a “silent virus,” or that may present itself with mild to severe flu-like symptoms.
The Centers for Disease Control and Prevention (CDC) says that about 8,000 babies a year are born with congenital CMV or are born with permanent disabilities. It’s the #1 viral cause of birth defects–more common than Down syndrome.
How and why did I catch this virus that I hardly heard of? I read the CMV literature. It said women who take care of young children are more at risk of catching it because it is often excreted in their saliva and urine. Pregnant women should avoid kissing them on the face and sharing towels and utensils with them. Wash hands thoroughly, especially after wiping runny noses, changing diapers, and picking up toys from baby’s mouth.
When I was pregnant with Elizabeth, I not only had a baby Jackie of my own, I also had a licensed daycare center at home. I feel sick about what my lack of knowledge has done to my little girl. In milder cases, children with congenital CMV may gradually lose hearing, experience some visual impairment, or struggle with mild learning disabilities. But Elizabeth’s case was not easy.
“My life is over,” I thought. I asked God to heal him immediately, but since he did not, I begged him to kill me and prayed to die in an earthquake or lightning. I just could not handle raising such a troubled child, period. Although children are supposed to be blessings, I felt far from blessed–I felt hurt.
Thankfully my husband Jim’s love for Elizabeth outweighed his grief. He said, “He needs me. I want to protect him from this cruel world he was born into.” He was like Charlie Brown with that pathetic Christmas tree.
“Oh God,” I prayed, “please help me love Elizabeth too.”
At first, every time I looked at Elizabeth, my heart broke anew. I could not see past his prognosis. The foreboding became more of a person than Elizabeth—it was a living creature that tormented me relentlessly.
If I could ever move on and find happiness again, I knew the unanswered questions swirling in my head, “What will she be like in the future?”; “Why didn’t my OB/GYN warn me about this?” and “Why would God let me get CMV?”
In the days after Elizabeth was born, all I could do was snuggle her and read the book of Psalms. Before Elizabeth was born, I couldn’t really relate to the Psalms. I thought, “Wow, those people are really sad!” Now, I am comforted by their bitter questions, such as, “How long must I bear pain in my soul and be sad all day long?” Knowing I’m not the only disappointment in life makes me feel less alone.
It took months for Elizabeth to finally figure out where my face was, but then one day she looked directly into my eyes and smiled—we finally connected! I slowly began to think, “If he doesn’t care that he is severely mentally retarded, and will, barring a miracle, never walk or talk, why should I be so upset?” Maybe it was the soothing Valium talking about, but that thought stuck with me, even when I no longer needed “mommy’s little helper” to get me out of bed and into the shower.
Eventually, I no longer focused on Elizabeth’s disability, but on her ability—her admiration for living for one. Although she couldn’t hold her head up or move her tightly clenched fists to reach the toy, she could hear and see—at least a little. She could hardly crawl and sit up on her own, but she could sit contentedly on my lap for hours and study my face with her big blue eyes capped with long black eyelashes. As I smiled at her, she smiled ear to ear in return, letting me know that my only happiness in this world was with her.
It took about a year, but I finally stopped praying that a nuclear bomb would fall on my house so I could escape my overwhelming anguish over Elizabeth’s condition. Life got better again. We were finally able to move forward as a happy, “normal” family. Even strangers played a role in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair on a coaster at the New York County Fair, I felt myself sink into a depression as the children stared at my little girl who couldn’t even hold her head up. “He looks funny,” the kids said aloud to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he’d been drinking for years, ran up to me from behind his game booth. My alarm melted into tears of gratitude as she handed me a big, brown teddy bear from her prize stash and said, “I want your daughter to have this.”
A long-term nagging problem, however, was the day my older daughter Jackie asked, “Can I have a dog?”
I screamed. The dreaded day was here – all the kids inevitably asked for one. And why wouldn’t they? Movie dogs like Lassie pull you out of burning buildings and keep you warm when you’re lost in a blizzard. But when we’re adults, we learn the truth about them: They pee on your new wall-to-wall carpet, dig holes in your leather recliner to hide their raw bones, and bite your neighbor’s baby.
“No, you can’t have a dog,” I said, bracing myself for the age-old argument. “We just can’t risk a dog around your sister.” I hate to admit it. I didn’t want him to blame Elizabeth for being so fragile. But taking care of Elizabeth was already enough work without adding a dog that could play her.
I know! I’ll give Jackie the “lip biting story”. This will convince her that we can’t have a dog around her sister.
“When I was 13,” I began, “I asked Grandma and Grandpa to let me have a Weimaraner. His name was Bogie—short for Humphrey Bogart—and he was a nipper. One day, my two-year-old cousin Susannah popped a popsicle in her mouth. was playing on the floor under the table with a stick. Buggy hit the stick and bit her lip! My grandmother took the lip off the carpet and wrapped it in a paper napkin to the hospital. But it couldn’t be stitched back together. A surgeon fixed Suzanne’s face, but when we got home, My mother lifted the buggy into the back seat of the car and took him to the vet. I never saw him again. He ‘walked the long way’ as they say in the movie Lady and the Tramp.”
I paused so that Jackie could let the horror of the incident sink in.
But he just wanted to know, “Where are Susanna’s lips now?”
“God, I don’t know! The last time I saw him his lips were stuck to a napkin, all shriveled up and like the mummy on my grandmother’s bookshelf. But that’s beside the point; don’t you see how dangerous a dog can be? To your sister? She Can’t talk—how can she call us if she’s in another room and the dog bothers her?”
If there had been a dog like Lassie, Elizabeth could have used one, but I couldn’t take that chance on an animal that could live up to 13 years.
After many tears and arguments, I finally made Jackie a promise: “If God brings one to our door, you can have it. How about that?”
“Really?” she asked, a smile spreading across her face.
“If someone shows up at our door, I’ll assume it’s a sign from God that it’s a special dog that will be gentle around Elizabeth.”
“Mom, I love you!” She threw her arms around my neck and kissed my cheek.
I felt bad – all I really gave him was some hope. Jackie actually thought a dog would show up.
Perhaps a dog was a compromise? There must be a pet that won’t hurt Elizabeth. A goldfish? I mean, other than a freak accident, like it flipping out of its bowl and hitting Elizabeth in the face, the thing couldn’t possibly hurt her. A rat-like creature? They’re recreationally-running around on hamster wheels, with no indication they’re going anywhere. Maybe Elizabeth would enjoy a hamster too. He was unable to hold it, but he might find it amusing to watch it go on wheels.
Maybe a rolling hamster will make Jackie forget about a dog—the way my parents thought getting me a buggy would make me forget the boys…
Of course, what happens next is a completely different story!
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