Loving my Christmas girl disabled by congenital CMV

Waiting for our second child, who would 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: “His head seems 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 at all times. If she lives, she will never turn around, sit or feed herself.”

It concluded that Elizabeth’s birth defects were caused by congenital cytomegalovirus (CMV), a virus that may not present symptoms to the mother, known as the “silent virus,” or it may present with symptoms similar to those of the mild flu. to serious.

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

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

While I was pregnant with Elizabeth, I not only had a small boy, Jackie, but I also had a licensed daycare at my home. I felt bad for what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may experience gradual hearing loss, be visually impaired, or struggle with mild learning disabilities. But Elizabeth’s case was not mild.

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 for him to crush me to death in an earthquake or lightning strike. He couldn’t bear raising such a heartbroken child, period. Although children are supposed to be a blessing, I felt far from being blessed, I felt heartbroken.

Fortunately, my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she was born into.” He 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 again. He couldn’t see past his forecast. 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 thinking about the unanswerable 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 I could do was rock her and read the book of Psalms. Before Elizabeth was born, I really couldn’t relate to the psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in his bitter questions, such as, “How long should I bear the pain in my soul and have pain 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 straight in the eye and smiled – we had finally connected! Little by little I began to think, “If she doesn’t care that I have severe mental retardation and, aside from a miracle, she will never walk or speak, why should she be so upset?” Maybe it was the sedative Valium speaking, but that thought stuck with me, even when I no longer needed “my mother’s little helpers” to get me out of bed and into the shower.

In time, I no longer focused on Elizabeth’s disabilities, but on her abilities: her appreciation for being alive for one. Although he couldn’t raise 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 alone, much less crawl, but she could sit for hours snuggled contentedly on 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 from ear to ear, letting me know that my happiness with her was all I needed to be satisfied in this world.

It took me about a year, but I finally stopped praying for a nuclear bomb to fall on my house so that I could escape my overwhelming anguish over Elizabeth’s condition. Life was good again. We were finally able to move on as a happy and “normal” family. Even strangers helped lift my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the mud at a New York county fair, I felt like I was sinking into a depression because the kids were staring at my little girl who couldn’t even lift her head. “It looks funny,” the children said aloud to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who seemed to have been drinking for years, rushed out from behind his gaming stall and approached me. My alarm turned to tears of gratitude when he handed me a large brown teddy bear from his prize stash and said, “I want your daughter to have this.”

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

I shrugged. The dreaded day has arrived: all children inevitably ask for one. And why shouldn’t they? Movie dogs like Lassie drag you from burning buildings and keep you warm when you’re lost in a snowstorm. But by the time we’re adults, we’ve learned the truth about them: They pee on their new wall-to-wall carpets, dig holes in their leather recliners to hide their rawhide bones, and bite their neighbor’s child.

“No, you can’t have a dog,” I said, preparing myself for the old argument. “We can’t risk having a dog with your sister.” He 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 could playfully bite her.

He! I’ll tell Jackie the “lip cut story.” That will convince her that we can’t have a dog around her 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 nipper.” One day my two-year-old cousin Suzannah was playing on the floor under the table with a popsicle stick in her mouth. Bogie broke the stick and bit his lip! My grandmother pulled her lip out of the carpet and wrapped it in a paper napkin to take to the hospital. could not be sewn. A surgeon fixed Suzannah’s face, but when we got home, my mother 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 let the horror of the incident sink in.

But all he wanted to know was: “Where is Suzannah’s lip now?”

“God, I don’t know! Last time I saw her lip was glued to the napkin, all wrinkled and like a mummy on my grandmother’s shelf. But that’s beside the point, can’t you see how it could be a dog? Because of your sister? She can’t speak, what would she call us if she was in another room and the dog was bothering her?

If there were a Lassie-like dog, Elizabeth more than anyone could use one, but I couldn’t risk it like that 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’s that?”

“Actually?” he asked, a smile spread across his face.

“If one shows up on our doorstep, I will assume it is a sign from God that he is a special dog that will be kind to Elizabeth.”

“I love you mama!” He wrapped his arms around my neck and kissed me on the 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 gold fish? I mean, apart from some freak accident, like it came out of its bowl and hit Elizabeth in the face, the thing couldn’t hurt her. A hamster? They are entertaining, running around and around in a hamster wheel with no idea that they are going nowhere. Perhaps Elizabeth could also enjoy a hamster. She was unable to hold him, but she might find it amusing to watch him race on her wheel.

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

Of course, what happens next is a completely different story!

Lisa saunders

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