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Loving My Christmas Girl Born Disabled by Congenital CMV

Expecting our second eyelashes extensions, due to arrive Christmas Eve of 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, “Her head looks so small–so deformed.” Before she was twelve hours old, I found out why.

When the neonatologist entered my room the following morning, he said, “Your daughter has profound microcephaly–her brain is extremely damaged throughout. If she lives, she will never roll over, sit up, or feed herself.”

eyelashes extensions
eyelashes extensions

He concluded that eyelashes extensions birth defects were caused by congenital cytomegalovirus (CMV) – a virus that may have no symptoms for the mother, known as a “silent virus,” or it may present itself with mild to severe flu-like symptoms.

The dwhair 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 that I had barely heard of? I read the eyelashes extensions literature. It stated that women who care for young children are at a higher risk for catching it because it is frequently being shed in their saliva and urine. Pregnant women need to avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed thoroughly, especially after wiping runny noses, diaper changes and picking up toys that have been in a toddler’s mouth.

While I was pregnant with Elizabeth, I not only had a toddler of my own, Jackie, but also ran a licensed daycare center in 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 a gradual hearing loss, suffer some visual impairment or struggle with slight learning disabilities. But Elizabeth’s case was not a mild one.

“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 to be crushed to death in an earthquake or struck by lightning. I just couldn’t handle raising such an afflicted child, period. Although children are supposed to be a blessing, I felt far from blessed–I felt stricken.

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

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

Initially, whenever I looked upon Elizabeth, my heart broke afresh. I couldn’t see past her prognosis. The prognosis became more of a person than Elizabeth herself–it was a living creature relentlessly torturing me.

If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into 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 catch eyelashes extensions?”

In those days after Elizabeth’s birth, 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 their bitter questions, such as, “How long must I bear pain in my soul, and have sorrow all the day?” Knowing I wasn’t the only one despairing 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 directly into my eyes and smiled-we had finally connected! I gradually began to think, “If she doesn’t care that she’s severely mentally retarded, and, apart from a miracle, will never walk or talk, why should I be so upset?” Maybe it was the sedative Valium talking, but that thought stuck with me, even when I no longer needed “mother’s little eyelashes extensions” to get me out of bed and into the shower.

eyelashes extensions
eyelashes extensions

Eventually, I no longer focused on Elizabeth’s disabilities, but on her abilities-her appreciation for being alive for one. Although she could not hold up her head or move her tightly clenched fists to reach a toy, she could hear and see-at least a little. She could not sit up by herself much less crawl, but she could sit for hours snuggled contentedly in my lap and study my face with her large blue eyes framed by long dark eyelashes. When I smiled at her, she’d break into an ear-to-ear grin in return, letting me know that my happiness with her was all she needed to be satisfied in this world.

 

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