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Loving My Christmas Girl Born Disabled by Congenital CMV
Expecting our second child, who would arrive on Christmas Eve 1989, had been a delightful experience. What a Christmas present! But the moment Elizabeth was born on December 18 I felt a stab of fear. My immediate thought was, “His head looks so small, so misshapen.” Before I was twelve hours old I found out why.
When the neonatologist came into my room the next morning, he said, “Your daughter has profound microcephaly—her brain is severely damaged 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), a virus that may have no symptoms for the mother, known as a “silent virus,” or that can have mild to severe flu-like symptoms.
The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies a year are born with or develop permanent disabilities because of congenital CMV. It is the #1 viral cause of birth defects, more common than Down syndrome.
How and why did I catch this virus I barely heard about? I have read the CMV literature. He stated that women who care for young children are at greater risk of contracting this disease because it is often shed in saliva and urine. Pregnant women should avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed well, especially after wiping a runny nose, changing a diaper, and picking up toys that have been in a child’s mouth.
While I was pregnant with Elizabeth, I not only had a child of my own, Jackie, but also ran a licensed daycare center in my home. I felt sick about what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may experience gradual hearing loss, experience some visual impairment, or struggle with mild learning disabilities. But Elizabeth’s case was not light.
“My life is over,” I thought. I asked God to heal her instantly, but when He didn’t, I asked Him to kill me and prayed that I would be crushed to death in an earthquake or struck by lightning. I couldn’t bear to raise such a grieving child, period. Although children are supposed to be a blessing, I felt far from blessed, I felt affected.
Fortunately, my husband Jim’s love for Elizabeth far outweighed her pain. He said, “She needs me. I want to protect her from this cruel world she was born into.” It was just like Charlie Brown with that pathetic Christmas tree.
“Oh God,” I prayed, “please help me love Elizabeth too.”
Initially, whenever I looked at Elizabeth, my heart would break all over again. He could not see past his prognosis. The prognosticator became more of a person than Elizabeth herself: she was a living creature that tortured me relentlessly.
If I was ever going to move on and find happiness again, I knew I had to stop dwelling on the unanswered questions that kept popping up in my head like, “What will she be like in the future?”; “Why didn’t my OB/GYN tell me about this?” and “Why would God let me get CMV?”
In those days after Elizabeth’s birth, all she could do was rock her and read the book of Psalms. Before Isabel was born, I really couldn’t relate to the psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in their bitter questions, such as, “How long must I endure pain in my soul and be sad all day long?” Knowing I wasn’t the only one who was desperate for life made me feel less alone.
It took Elizabeth a couple of months to finally figure out where my face was, but one day she looked straight into my eyes and smiled. We are finally connected! Little by little I began to think, “If she doesn’t care that I’m severely mentally retarded and, barring a miracle, will never walk or talk, why should I be so upset?” Maybe it was the sedative Valium talking, but that thought stayed with me, even when I no longer needed “mommy helpers” to get me out of bed and into the shower.
Finally, I no longer focused on Elizabeth’s disabilities, but on her abilities: her appreciation for being alive. Although he couldn’t lift his head or move his clenched fists to reach for a toy, he could hear and see, at least a little. She couldn’t sit up on her own much less crawl, but she could sit for hours curled up contentedly on my lap and study my face with her big blue eyes framed by long dark lashes. When I smiled at her, she smiled back, letting me know that my happiness with her was all I needed to be satisfied in this world.
It took about a year, but I finally stopped praying for a nuclear bomb to fall on my house so I could escape my overwhelming anguish over Elizabeth’s condition. Life was good again. We were finally able to move on as a happy, “normal” family. Even strangers played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the garbage of a New York county fair, I felt myself sinking into a depression because the kids were staring at my little girl who couldn’t even hold her head up. “She looks funny,” the children said aloud to their embarrassed parents. In the middle of my dark thoughts, a heavily tattooed carnival man, who looked like he’d been drinking for years, ran from behind his gambling booth and came right up to me. My alarm melted into tears of gratitude as she handed me a large brown teddy bear from her prize stash and said, “I want your daughter to have this.”
However, a long-term nagging problem began the day my oldest daughter, Jackie, asked, “Can I have a dog?”
I shrank The dreaded day has arrived: every child inevitably asks for one. And why wouldn’t they? Movie dogs like Lassie drag 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 carpets, they poke holes in your leather couches to hide their rawhide bones, and they bite your neighbor’s toddler.
“No, you can’t have a dog,” I said, bracing myself for the old argument. “We just can’t risk a dog around your sister.” He hated to admit it. He didn’t want her to blame Elizabeth for being so fragile. But taking care of Elizabeth was enough work without adding a dog that could nibble on her.
I know! I’ll give Jackie the “lip-snapping story.” That will convince you we can’t have a dog around your sister.
“When I was 13,” I began, “I convinced Grandma and Grandpa to let me have a Weimaraner. His name was Bogie—short for Humphrey Bogart—and he was a pincer. One day, my two-year-old cousin Suzannah was playing on the floor under the table with a Popsicle stick in his mouth. Bogie broke the stick and bit his lip! My grandma took his lip off the carpet and wrapped it in a paper napkin to take to the hospital. It couldn’t be sewn back together. A surgeon fixed Suzannah’s face, but when we got home, my mom loaded Bogie into the back seat of the car and took him to the vet. I never saw him again. He took the ‘long walk.’ ‘like they say in the movie Lady and the Tramp.’
I paused so Jackie could let the horror of the incident sink in.
But all he wanted to know was, “Where is Suzannah’s lip now?”
“Oh, I don’t know! The last time I saw his lip he was stuck to the napkin, all shriveled up and like a mummy on my grandmother’s bookcase. But that’s pointless; you can’t see how dangerous a dog can be. be for your sister? She can’t talk, how would she call us if she was in another room and the dog was bothering her?
If there was a dog like Lassie out there, Elizabeth more than anyone could use one, but I just couldn’t put that kind of 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, then you can have it. How’s that?”
“Really?” she asked, a smile spreading across her face.
“If one shows up at our door, I’ll assume it’s a sign from God that it’s a special dog that will be kind to Elizabeth.”
“Mommy, I love you!” She threw her arms around my neck and kissed my cheek.
I felt bad, all I had really given him was a little hope. Jackie really thought a dog would show up.
Maybe there was an engagement with a dog? There must be a pet out there that wouldn’t hurt Elizabeth. A goldfish? I mean, apart from a freak accident like it coming out of its bowl and hitting Elizabeth in the face, the thing couldn’t hurt her. A hamster? They are entertained – running around on a hamster wheel with no idea that they are going nowhere. Maybe Elizabeth can enjoy a hamster too. He was incapable of holding him, but it might be fun to watch him run on his wheel.
Maybe a spinning hamster would make Jackie forget about a dog, the way my parents thought it would help me forget about children…
Of course, what happens next is another story!
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