Loving My Christmas Woman Born Disabled by Congenital CMV


Anticipating our second little one, as a result of arrive Christmas Eve of 1989, had been a pleasant expertise. What a Christmas current! However the second Elizabeth was born on December 18. I felt a stab of worry. My fast thought was, “Her head appears to be like so small–so deformed.” Earlier than she was twelve hours previous, I discovered why.

When the neonatologist entered my room the next morning, he stated, “Your daughter has profound microcephaly–her mind is extraordinarily broken all through. If she lives, she is going to by no means roll over, sit up, or feed herself.”

He concluded that Elizabeth’s start defects have been attributable to congenital cytomegalovirus (CMV) – a virus that will haven’t any signs for the mom, often called a “silent virus,” or it could current itself with delicate to extreme flu-like signs.

The Facilities for Illness Management and Prevention (CDC) states that roughly 8,000 infants a 12 months are born with or develop everlasting disabilities due to congenital CMV. It’s the #1 viral explanation for start defects–more frequent than Down syndrome.

How and why did I catch this virus that I had barely heard of? I learn the CMV literature. It said that ladies who look after younger youngsters are at a better threat for catching it as a result of it’s incessantly being shed of their saliva and urine. Pregnant ladies have to keep away from kissing them on the mouth and sharing towels and utensils with them. Palms needs to be washed completely, particularly after wiping runny noses, diaper modifications and selecting up toys which have been in a toddler’s mouth.

Whereas I used to be pregnant with Elizabeth, I not solely had a toddler of my very own, Jackie, but in addition ran a licensed daycare middle in my residence. I felt sick at what my lack of understanding had finished to my little woman. In milder instances, youngsters with congenital CMV might expertise a gradual listening to loss, undergo some visible impairment or wrestle with slight studying disabilities. However Elizabeth’s case was not a gentle one.

“My life is over,” I believed. I requested God to heal her immediately, however since He did not, I begged him to kill me and prayed to be crushed to dying in an earthquake or struck by lightning. I simply could not deal with elevating such an stricken little one, interval. Though youngsters are presupposed to be a blessing, I felt removed from blessed–I felt stricken.

Fortunately my husband Jim’s love for Elizabeth far outweighed his grief. He stated, “She wants me. I wish to shield her from this merciless world she has been born into.” He was similar to Charlie Brown with that pathetic Christmas tree.

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

Initially, at any time when I appeared upon Elizabeth, my coronary heart broke afresh. I could not see previous her prognosis. The prognosis turned extra of an individual than Elizabeth herself–it was a dwelling creature relentlessly torturing me.

If I used to be ever to maneuver ahead and discover happiness once more, I knew I needed to cease dwelling on the unanswerable questions that stored popping into my head like, “What’s going to she be like sooner or later?”; “Why did not my OB/GYN warn me about this?” and “Why would God let me catch CMV?”

In these days after Elizabeth’s start, all I might do was rock her and skim the e-book of Psalms. Earlier than Elizabeth was born, I actually could not relate to the Psalmists. I believed, “Wow, these individuals are actually depressed!” Now, I discovered consolation of their bitter questions, equivalent to, “How lengthy should I bear ache in my soul, and have sorrow all of the day?” Realizing I wasn’t the one one despairing of life made me really feel much less alone.

It took Elizabeth a few months to lastly work out the place my face was, however then sooner or later she appeared immediately into my eyes and smiled-we had lastly linked! I step by step started to suppose, “If she would not care that she’s severely mentally retarded, and, other than a miracle, won’t ever stroll or speak, why ought to I be so upset?” Perhaps it was the sedative Valium speaking, however that thought caught with me, even once I not wanted “mom’s little helpers” to get me off the bed and into the bathe.

Ultimately, I not centered on Elizabeth’s disabilities, however on her abilities-her appreciation for being alive for one. Though she couldn’t maintain up her head or transfer her tightly clenched fists to achieve a toy, she might hear and see-at least slightly. She couldn’t sit up by herself a lot much less crawl, however she might sit for hours snuggled contentedly in my lap and examine my face along with her giant blue eyes framed by lengthy darkish eyelashes. After I smiled at her, she’d break into an ear-to-ear grin in return, letting me know that my happiness along with her was all she wanted to be happy on this world.

It took a few 12 months, however I ultimately stopped praying {that a} nuclear bomb would drop on my home so I might escape my overwhelming anguish over Elizabeth’s situation. Life did grow to be good once more. We have been finally in a position to transfer forward as a contented, “regular” household. Even strangers performed a component in lifting my spirits. One afternoon, battling Elizabeth’s wheelchair by the muck of an upstate New York county truthful, I felt myself sinking right into a despair as a result of youngsters have been gazing my little woman who couldn’t even maintain up her head. “She appears to be like humorous,” children stated loudly to their embarrassed dad and mom. Within the midst of my darkish ideas, a closely tattooed carnival man, who appeared like he had been consuming for years, ran from behind his recreation sales space and got here proper as much as me. My alarm melted into tears of gratitude when he handed me a big, brown teddy bear from his stash of prizes and stated, “I would like your daughter to have this.”

One long-term nagging drawback, nonetheless, started the day my older daughter, Jackie, requested, “Can I’ve a canine?”

I cringed. The dreaded day was here-all children inevitably ask for one. And why would not they? Film canines like Lassie drag you from burning buildings and maintain you heat if you’re misplaced in a blizzard. However by the point we’re adults, we have discovered the reality about them: they urinate in your new wall-to-wall carpets, dig holes in your leather-based recliners to cover their rawhide bones, and chew your neighbor’s child.

“No, you possibly can’t have a canine,” I stated, bracing myself for the age-old argument. “We simply cannot threat a canine round your sister.” I hated admitting that. I did not need her accountable Elizabeth for being so fragile. However caring for Elizabeth was already sufficient work with out including a canine which may playfully nip at her.

I do know! I am going to give Jackie the “lip-severing story.” That’ll persuade her we won’t have a canine round her sister.

“After I was 13,” I started, “I talked Grandma and Grandpa into letting me have a Weimaraner. His identify was Bogie-short for Humphrey Bogart-and he was a nipper. Sooner or later, my two-year-old cousin Suzannah was enjoying on the ground beneath the desk with a Popsicle stick in her mouth. Bogie snapped on the stick and bit her lip off! My grandmother bought the lip off the carpet and wrapped it in a paper serviette to take to the hospital. Nevertheless it could not be sewn again on. A surgeon fastened Suzannah’s face, however once we bought residence, my mom loaded Bogie into the again seat of the automotive and took him to the vet’s. I by no means noticed him once more. He took the ‘lengthy stroll’ as they are saying within the Girl and the Tramp film.”

I paused so Jackie might let the horror of the incident sink in.

However all she wished to know was, “The place’s Suzannah’s lip now?”

“Gosh, I do not know! The final time I noticed her lip it was caught to the serviette, all shriveled and mummy-like on my grandmother’s bookshelf. However that is inappropriate; cannot you see how harmful a canine might be to your sister? She will’t speak-how would she name out to us if she was in one other room and the canine was bothering her?”

If there have been a Lassie-like canine on the market, Elizabeth greater than anyone might use one, however I simply could not take that sort of an opportunity on an animal that would stay as much as 13 years.

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

“Actually?” she requested, a smile spreading throughout her face.

“If one exhibits up at our door, I am going to assume it’s a signal from God that it is a particular canine who shall be mild round Elizabeth.”

“Mother, I really like you!” She threw her arms round my neck and kissed my cheek.

I felt bad-all I had actually given her was a little bit of hope. Jackie really thought a canine would present up.

Maybe there was a compromise to a canine? There should be a pet on the market that would not damage Elizabeth. A goldfish? I imply apart from a freak accident, prefer it flipping out of its bowl and hitting Elizabeth within the face, the factor could not probably damage her. A hamster? They’re entertaining-running round and round in a hamster wheel with no clue they are not going wherever. Perhaps Elizabeth might take pleasure in a hamster too. She was incapable of holding it, however she may discover it amusing to observe it run in its wheel.

Maybe a spinning hamster would make Jackie overlook a few dog-the means my dad and mom thought getting me Bogie would assist me overlook about boys…

After all what occurs subsequent is a complete different story!

Lisa Saunders


Supply by Lisa Saunders

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