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Loving My Christmas Girl Born Disabled by Congenital CMV
Expecting our second child, 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.”
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 it may present itself with 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 that I had barely heard of? I read the CMV 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 grief. 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 CMV?”
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 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 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.
It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth’s condition. Life did become good again. We were eventually able to move ahead as a happy, “normal” family. Even strangers played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the muck of an upstate New York county fair, I felt myself sinking into a depression because children were staring at my little girl who could not even hold up her head. “She looks funny,” kids said loudly to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he had been drinking for years, ran from behind his game booth and came right up to 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.”
One long-term nagging problem, however, began the day my older daughter, Jackie, asked, “Can I have a dog?”
I cringed. The dreaded day was here-all kids inevitably ask 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 by the time we’re adults, we’ve learned the truth about them: they urinate on your new wall-to-wall carpets, dig holes in your leather recliners to hide their rawhide bones, and bite your neighbor’s kid.
“No, you can’t have a dog,” I said, bracing myself for the age-old argument. “We just can’t risk a dog around your sister.” I hated admitting that. I didn’t want her to blame Elizabeth for being so fragile. But taking care of Elizabeth was already enough work without adding a dog that might playfully nip at her.
I know! I’ll give Jackie the “lip-severing story.” That’ll convince her we can’t have a dog around her sister.
“When I was 13,” I began, “I talked Grandma and Grandpa into letting 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 underneath the table with a Popsicle stick in her mouth. Bogie snapped at the stick and bit her lip off! My grandmother got the lip off the carpet and wrapped it in a paper napkin to take to the hospital. But it couldn’t be sewn back on. 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’s. I never saw him again. He took the ‘long walk’ as they say in the Lady and the Tramp movie.”
I paused so Jackie could let the horror of the incident sink in.
But all she wanted to know was, “Where’s Suzannah’s lip now?”
“Gosh, I don’t know! The last time I saw her lip it was stuck to the napkin, all shriveled and mummy-like on my grandmother’s bookshelf. But that’s beside the point; can’t you see how dangerous a dog could be for your sister? She can’t speak-how would she call out to us if she was in another room and the dog was bothering her?”
If there were a Lassie-like dog out there, Elizabeth more than anybody could use one, but I just couldn’t take that kind of a 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 is a sign from God that it’s a special dog who will be gentle around Elizabeth.”
“Mom, I love you!” She threw her arms around my neck and kissed my cheek.
I felt bad-all I had really given her was a bit of hope. Jackie actually thought a dog would show up.
Perhaps there was a compromise to a dog? There must be a pet out there that wouldn’t hurt Elizabeth. A goldfish? I mean other than a freak accident, like it flipping out of its bowl and hitting Elizabeth in the face, the thing couldn’t possibly hurt her. A hamster? They are entertaining-running around and around in a hamster wheel with no clue they aren’t going anywhere. Maybe Elizabeth could enjoy a hamster too. She was incapable of holding it, but she might find it amusing to watch it run in its wheel.
Perhaps a spinning hamster would make Jackie forget about a dog-the way my parents thought getting me Bogie would help me forget about boys…
Of course what happens next is a whole other story!
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