Loving My Christmas Girl Born Disabled by Congenital CMV

Anticipating our second little one, because 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 quick thought was, “Her head seems so small–so deformed.” Earlier than she was twelve hours previous, I discovered why.

When the neonatologist entered my room the next morning, he mentioned, “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 had been brought on by congenital cytomegalovirus (CMV) – a virus which 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 yr are born with or develop everlasting disabilities due to congenital CMV. It’s the #1 viral reason behind 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 girls who take care of 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. Fingers ought to be washed completely, particularly after wiping runny noses, diaper adjustments and choosing 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 heart in my dwelling. I felt sick at what my lack of awareness had executed to my little woman. In milder instances, youngsters with congenital CMV might expertise a gradual listening to loss, undergo some visible impairment or battle with slight studying disabilities. However Elizabeth’s case was not a light 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 purported 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 mentioned, “She wants me. I wish to defend her from this merciless world she has been born into.” He was identical to Charlie Brown with that pathetic Christmas tree.

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

Initially, every time I seemed upon Elizabeth, my coronary heart broke afresh. I could not see previous her prognosis. The prognosis grew to become 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 saved 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 browse the guide of Psalms. Earlier than Elizabeth was born, I actually could not relate to the Psalmists. I believed, “Wow, these persons are actually depressed!” Now, I discovered consolation of their bitter questions, similar 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 in the future she seemed immediately into my eyes and smiled-we had lastly related! I step by step started to suppose, “If she would not care that she’s severely mentally retarded, and, aside from a miracle, won’t ever stroll or speak, why ought to I be so upset?” Possibly it was the sedative Valium speaking, however that thought caught with me, even once I now not wanted “mom’s little helpers” to get me away from bed and into the bathe.

Finally, I now not targeted 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 massive 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 glad on this world.

It took a couple of yr, 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 had been ultimately in a position to transfer forward as a cheerful, “regular” household. Even strangers performed a component in lifting my spirits. One afternoon, combating Elizabeth’s wheelchair by way of the muck of an upstate New York county truthful, I felt myself sinking right into a despair as a result of youngsters had been looking at my little woman who couldn’t even maintain up her head. “She seems humorous,” youngsters mentioned loudly to their embarrassed dad and mom. Within the midst of my darkish ideas, a closely tattooed carnival man, who seemed like he had been consuming for years, ran from behind his sport 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 mentioned, “I need your daughter to have this.”

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

I cringed. The dreaded day was here-all youngsters inevitably ask for one. And why would not they? Film canine 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’ll be able to’t have a canine,” I mentioned, 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 guilty Elizabeth for being so fragile. However taking good care of Elizabeth was already sufficient work with out including a canine that may playfully nip at her.

I do know! I will 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. Someday, 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 obtained 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 obtained dwelling, 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 needed 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 may very well be to your sister? She will be able to’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 might 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’ll be able to have it. How’s that?”

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

“If one reveals up at our door, I will 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 truly 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 aside from a freak accident, prefer it flipping out of its bowl and hitting Elizabeth within the face, the factor could not presumably damage her. A hamster? They’re entertaining-running round and round in a hamster wheel with no clue they don’t seem to be going anyplace. Possibly Elizabeth might take pleasure in a hamster too. She was incapable of holding it, however she would possibly discover it amusing to observe it run in its wheel.

Maybe a spinning hamster would make Jackie neglect a couple of dog-the method my dad and mom thought getting me Bogie would assist me neglect about boys…

In fact what occurs subsequent is a complete different story!

Lisa Saunders

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