Loving My Christmas Girl was born disabled by congenital CMV

Waiting for our second child, due to arrive on Christmas Eve 1989, had been a wonderful experience. What a Christmas present! But the moment Elizabeth was born, on December 18, I felt a pang of fear. My immediate thought was: “Her 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 extremely damaged. If she lives, she will never roll over, sit up, or feed herself.”

It 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 may present with mild to severe flu-like symptoms.

The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies each year are born or develop permanent disabilities due to congenital CMV. It is the #1 viral cause of birth defects, more common than Down syndrome.

How and why did I get this virus that I had barely heard of? I read the CMV literature. He stated that women who care for young children are at higher risk of contracting it because it is frequently 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 diapers, and picking up toys that have been in a toddler’s mouth.

While pregnant with Elizabeth, I not only had a little girl, Jackie, but also ran a licensed daycare center out of 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 experience gradual hearing loss, visual impairment, or mild learning problems. But Elizabeth’s case was not light.

“My life is over,” I thought. I asked God to heal her instantly, but since he didn’t, I begged him to kill me and prayed that he would crush me to death in an earthquake or be struck by lightning. I just 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 heartbroken.

Fortunately, my husband Jim’s love for Elizabeth far outweighed his grievance. He said, “She needs me. I want to protect her from this cruel world that she was born into.” She was like Charlie Brown with that pathetic Christmas tree.

“Oh God,” I prayed, “please help me love Elizabeth too.”

Initially, every time I looked at Elizabeth, my heart would break all over again. He couldn’t see past her prognosis. The prognosis 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 warn me about this?” and “Why would God let me get CMV?”

In those days after Elizabeth was born, all she could do was rock her and read the book of Psalms. Before Elizabeth was born, I couldn’t really identify with the psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in her bitter questions, such as: “How long will I have to suffer pain in my soul, and have sadness all day?” Knowing that I wasn’t the only one 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 me square in the eye and smiled: we had finally connected! Gradually I began to think: “If she doesn’t care that she is severely mentally retarded and, apart from a miracle, she 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 my “mother’s little helpers” to get me out of bed and into the shower.

Eventually, I no longer focused on Elizabeth’s disabilities, but on her abilities, her appreciation of being alive to one. Although she couldn’t raise her head or move her clenched fists to reach for a toy, she 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 in my lap and study my face with her big blue eyes framed by long dark lashes. When I smiled at her, she would smile back at me from ear to ear, letting me know that my happiness with her was all I needed to be fulfilled in this world.

It took about a year, but I eventually stopped praying that a nuclear bomb would fall on my house so that I could escape my overwhelming anguish over Elizabeth’s condition. Life was good again. Eventually we were able to move on as a happy, “normal” family. Even strangers helped lift my spirits. One afternoon, as I wrestled Elizabeth’s wheelchair in the mud at a county fair in upstate New York, 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 called out 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 out from behind his gaming booth and approached me. My alarm turned to tears of gratitude as he handed me a large brown teddy bear from his prize pool and said, “I want your daughter to have this.”

However, a long-term, persistent problem began the day my oldest daughter, Jackie, asked, “Can I have a dog?”

I cried. The dreaded day was here, every child inevitably asks for one. And why wouldn’t they? Movie dogs like Lassie drag you from burning buildings and keep you warm when you’re lost in a blizzard. But as adults, we’ve learned the truth about them: They pee on your new wall-to-wall carpeting, they dig holes in your leather recliners to hide their rawhide bones, and they bite your neighbor’s kid.

“No, you can’t have a dog,” I told him, bracing myself for the old argument. “We just can’t risk a dog near your sister.” I hated to admit that. 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 might playfully bite her.

I know! I’ll tell Jackie the “lip slicing story.” That will convince her that we can’t have a dog near her sister.

“When I was 13,” I began, “I talked my grandmother and grandfather into letting me have a Weimaraner. His name was Bogie, short for Humphrey Bogart, and he was a wacko. One day my two-year-old cousin Suzannah was playing on the floor under the table with a popsicle stick in her mouth. Bogie bit the stick and bit her lip! “It was a paper villein to take him to the hospital. It couldn’t be sewn back on. 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,’ as they say in the movie Lady and the Tramp.”

I paused so Jackie could take in the horror of the incident.

But all she wanted to know was, “Where’s Suzannah’s lip now?”

“God, I don’t know! The last time I saw her lip was stuck to her napkin, all crumpled up and like a mummy on my grandmother’s shelf. But that’s beside the point, can’t you see how dangerous a dog can be to your sister? She can’t talk, what 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 couldn’t take that kind of risk with an animal that could live up to 13 years.

After many tears and arguments, I finally made a promise to Jackie: “If God brings one to our door, then you can have it. How so?”

“Actually?” 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.”

“I love you mama!” She threw her arms around my neck and kissed my cheek.

I felt bad, all I had really given him was a little bit of hope. Jackie really thought a dog would show up.

Perhaps there was an engagement with a dog? There must be a pet out there that wouldn’t hurt Elizabeth. A gold fish? I mean, other than a freak accident, like him tipping out of her bowl and hitting Elizabeth right in the face, the thing couldn’t hurt her. A hamster? They are entertaining: they run and spin around in a hamster wheel with no idea that they are going nowhere. Maybe Elizabeth could enjoy a hamster too. She was unable to hold it, but she might find it amusing to watch it run on her wheel.

Maybe a spinning hamster would make Jackie forget about a dog, the same way my parents thought getting me Bogie would help me forget about kids…

Of course, what happens next is another story.

Lisa Saunders

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