Waiting for our second child, who would arrive on Christmas Eve 1989, was a delightful experience. What a Christmas present! But the moment Elizabeth was born, on December 18th, I felt a pang of fear. My immediate thought was, “Her head looks so small, so deformed.” Before he 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 survives, she will never turn around, sit or feed.”
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 the “silent virus,” or may present with mild to severe flu-like symptoms.
The Centers for Disease Control and Prevention (CDC) say that around 8,000 babies a year are born or develop permanent disabilities due to congenital CMV. It is the first viral cause of birth defects, more common than Down syndrome.
How and why did I get this virus I had just heard about? I have read the CMV literature. She said women who care for young children are at a greater risk of getting it 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 thoroughly, especially after cleaning a runny nose, changing diapers, and picking up toys that have been in a baby’s mouth.
While I was pregnant with Elizabeth, I not only had a baby of my own, Jackie, but I also ran a licensed daycare in my home. I felt bad about what my lack of knowledge did to my little girl. In milder cases, children with congenital CMV may suffer from gradual hearing loss, suffer from some vision impairment, or struggle with mild learning difficulties. But Elizabeth’s case was not a mild one.
“My life is over”, I thought. I asked God to heal her instantly, but because he didn’t, I begged him to kill me and I prayed to be crushed to death in an earthquake or struck by lightning. I just couldn’t bear to raise such a distressed child, period. While children are supposed to be a blessing, I felt anything but blessed – I felt impressed.
Thankfully, my husband Jim’s love for Elizabeth far outweighed his grief. She said, “She needs me. I want to protect her from this cruel world she was born into.” She was just 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 broke again. I couldn’t see beyond her her prognosis. The prognosis became more of a person than Elizabeth herself: she was a living creature who tortured me relentlessly.
If I ever had to go 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 it be like in the future?”; “Why didn’t my gynecologist / gynecologist warn me about this?” and “Why would God let me catch 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 couldn’t really relate to the Psalmists. I thought, “Wow, those people are really depressed!” Now, I found solace in their bitter questions, like, “How long will I have to endure the pain in my soul and have pain all day?” Knowing that I wasn’t the only one who despairs of life made me feel less alone.
It took Elizabeth a couple of months to finally figure out where my face was, but then one day she looked me directly in the eye and smiled – we finally connected! Gradually I began to think, “If you don’t care that you are severely mentally retarded and, apart from a miracle, you will never walk or talk, why should I be so upset?” Maybe it was the Valium sedative that spoke, but that thought stuck with me, even when I no longer needed “Mommy’s little helpers” to get me out of bed and shower.
Ultimately, I no longer focused on Elizabeth’s disabilities, but on her abilities: her appreciation for being alive for one. Even though she couldn’t hold her head up or move her clenched fists to reach for a toy, she could hear and see, at least a little. She couldn’t sit alone nor crawl, but she could sit happily curled up on her lap for hours and study my face with her big blue eyes framed by long dark lashes. When I smiled at her, she smiled back from ear to ear, letting me know that my happiness with her was all she needed to be satisfied in this world.
It took about a year, but I finally stopped praying that a nuclear bomb would fall on my house so that I could escape my overwhelming anguish over Elizabeth’s condition. Life is beautiful again. Eventually we were able to carry on as a happy, “normal” family. Strangers also played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair in the mud of a New York County fair, New York, I felt myself sinking into a depression as the children stared at my little girl who couldn’t even hold her. head held high. “Sounds funny,” the children said aloud to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who appeared to have been drinking for years, ran from behind his game booth and approached me. My alarm melted into tears of gratitude when he handed me a large brown teddy bear from his stash of prizes and said, “I want your daughter to have this.”
An annoying long-term problem, however, began the day my eldest daughter, Jackie, asked, “Can I have a dog?”
I shivered. The dreaded day had come: all the children inevitably asked for one. And why shouldn’t they? Cinema dogs like Lassie drag you from burning buildings and keep you warm when lost in a blizzard. But when we’re adults, we discovered the truth about them: they urinate on your new wall-to-wall rugs, dig holes in your leather armchairs to hide their rawhide bones, and bite your neighbor’s baby.
“No, you can’t have a dog,” I said, preparing myself for the age-old argument. “We can’t risk a dog with your sister.” I hated to admit it. I didn’t want him to blame Elizabeth for being so fragile. But taking care of Elizabeth was enough work without adding a dog that could playfully nibble on her.
I know! I’ll give Jackie the “lip-cutting story”. This will convince her that we can’t have a dog around her sister.
“When I was 13,” I started, “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. years he was playing on the floor under the table with a popsicle stick in his mouth. Bogie snapped the stick and bit his lip! My grandmother took her lip off the carpet and wrapped it in a paper towel to take him to the hospital . But it couldn’t be stitched up. A surgeon fixed Suzannah’s face, but when we got home, my mom put Bogie in the back seat of the car and took him to the vet. I never saw him again. He’s got it. took the “long walk”. ‘as they say in the movie The Lady and the Tramp. “
I stopped so that Jackie could sink the horror of the accident.
But all he wanted to know was, “Where’s Suzannah’s lip now?”
“Damn, I don’t know! Last time I saw her lip it was stuck to the napkin, all puckered and mummy-like on my grandmother’s bookshelf. But that’s not the point; you don’t see how dangerous a dog can be. for your sister? She can’t speak, what would she call us if she were in another room and the dog was bothering her? “
If there was a Lassie-like dog out there, Elizabeth more than anyone could use one, but I just couldn’t take that kind of chance on an animal that could live to be 13 years old.
After many tears and arguments, I finally made Jackie a promise: “If God brings one to our door, then you can have it. What is it like?”
“Really?” she asked, a smile spreading across her face.
“If one shows up at our door, I suppose it is a sign from God that he is a special dog who will be kind to Elizabeth.”
“Mom, I love you!” She threw her arms around my neck and kissed me on the cheek.
I felt bad: all I had really given her was a little bit of hope. Jackie really thought a dog was going to show up.
Maybe there was a compromise 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 he came out of her bowl and hit Elizabeth in the face, it couldn’t hurt her. An Hamster? They enjoy running around and around on a hamster wheel with no idea that they are not going anywhere. Maybe Elizabeth could enjoy a hamster too. She was unable to hold him, but she might find it amusing to see him run into her wheel.
Maybe a spinning hamster would make Jackie forget about a dog, the way my parents thought taking me Bogie would help me forget the kids …
Obviously what happens next is a whole other story!
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