A Very Different Story

I have known LeeAnn since February 1965

when my parents brought her home from the hospital. You see, she's my little sister. None of us knew that day how different this baby actually was or how different our lives were going to be because of her.

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I wanted a brother, since I was the only child and from Mom's previous marriage. I thought a brother would be the appropriate sibling.  To be honest, I think I was just parroting Mom. I didn't care what the baby was, I just wanted someone to play with. For seven years, I had been alone. Even though LeeAnn was different, I had someone to be with. It turned out that our play was therapeutic for her. I suppose I was too young to understand she wasn't supposed to be able to do any of the things we did in our play-time. But I'm getting ahead of myself...

I remember the day I walked into our house, across the street from my elementary school. I had impatiently waited all day, telling everyone in my second-grade-class my baby sister was coming home. I walked through the front door, looking all around, but seeing no baby. Disappointment swept over me. My aunt and grandmother had emphasized MAYBE several times, so I thought maybe she hadn't come home yet. Mom directed me around the corner where a white-laced bassinet has been tucked near the floor heater vent. All eyes were on me as I peered over the edge and saw nothing but a lump wrapped in a pretty blanket, but I said, "Aw."

Wait! Don't roll your eyes and click away. This all sounds pretty normal, but I assure you this is only the beginning of a VERY different story.

Almost immediately, the pediatrician, a man with a flat-top haircut and a bow tie at his collar until the day he retired in the 90s, noticed something was wrong. LeeAnn was too pale. The way it was explained to me was, "She has a hole in her heart."

You see, there is this bypass system for babies while they are in-utero. When they are born, that bypass system stops functioning and their heart begins pumping their blood through their body. LeeAnn's didn't do that.  That horizontal arrow, above, was the hole in her heart. She needed surgery.

Open heart surgery.

At six weeks old, she, once again, came home from the hospital, only this time with a "C" shaped incision on her back and a smaller incision at her groin. I was told her heart was fixed and she'd be fine. Except she wasn't exactly fine. She was also blind.

Cataracts. Not the kind my Great Aunties had, where they could go in and pop them out like a little grape. These cataracts were different. She had her first of thirty, that's three-zero, surgeries when she was three months old. This time she came home from the hospital with a huge bandage on her eye and I was terrified to hold her, but Mother made me anyway.

Several months passed before the doctor added one more thing to LeeAnn's list of "problems."

She was also deaf. Now it was time to sit down with my parents and figure out what went wrong. I wasn't present, but was told later the doctor asked mother if she had had any diseases during her pregnancy. She had had the German Measles before she realized she was pregnant but didn't realize they could do any harm to the baby. The doctor seemed horror stricken and proceeded to explain the affects of Rubella, also known as German or Three-day Measles.  In the end, LeeAnn was Blind, Deaf, had a hole in her heart, her immune system was greatly compromised, and she had mental retardation.

All because of the Rubella.

Their prognosis was dismal. IF she lived beyond a year, she would never walk, talk, or function beyond a six-month-old baby. Their advice: put the child in an institution to live the remainder of her life and go on with your own. Have more children. Move on.

But my mother couldn't do it.

LeeAnn stayed home with us. We functioned as best we could and, like I said earlier, I was too young to realize she would never...

The deafness was due to nerve damage in her inner-ear, which also affected her balance. She crawled until she was five or six years old, however, when she was around two, we played a game in which I got on my knees and held her arms over my shoulders, and she stood on my calves. This activity was fun, and we laughed a lot. She also learned to walk by this activity. (I had no idea!)

They said she would never have any level of understanding, but we developed our own language. It was a sign language of sorts. An example of this is when we played a modified version of hide-and-go-seek where I would show her a spool of thread, then I covered my eyes with my hands and pointed at the wall. LeeAnn would cover her eyes and lean against that same wall. I hid the spool in the house and came back to her. I held my hand up at my shoulders in a gesture of I-don't-know. She would then search the house until she found the spool. (Needless to say, I didn't hide it too much out of sight. She could see, but was very limited in what sight she had.) This was fun, and it occupied my time. I was no longer alone.

At three, the School for the Deaf accepted LeeAnn into a one-on-one class with a woman who began teaching her the real sign language. We started attending a sign language class for the public at the First Baptist Church so we could communicate with her also. LeeAnn learned ball and other useful signs. But the most important sign for us was the word "no." Until then, we had no way of telling her "no." When she climbed onto the curtain rod from Mom's couch all we could do was pull her off, maybe swat her behind. "No" was not in our made-up vocabulary. It was frustrating and difficult. But once we, and she, learned the sign for "no," we finally had a way to try to make her understand, "You can't do that."

She hated the sign, by the way. We soon learned how stubborn she really was. The sign is made by touching your index and second finger to your thumb. Literally, N to O. She would hold our fingers and thumb together so we couldn't sign the word. That, in itself, was funny to me.

They said she'd never talk, but I read the story of Helen Keller and Annie Sullivan and imitated Annie's method of holding Helen's hand to her throat and speaking. This allowed Helen to realize her teacher was generating a sound with her throat and learned to do the same. LeeAnn and I played this game as well, and she began verbalizing also. While she doesn't "speak," per se, she does verbalize with a "Mum mum mum mum" sound and in her mind, she is speaking just the same as you and I.

They said she'd have the intelligence of a young baby, but we put together large, cardboard brick-like blocks and made tracks that she then walked on, as I held her hand to help her balance. An assessment team from Austin, TX was amazed by what LeeAnn could cognitively do (such as this connecting blocks and then walking on them). They came into our home and discussed LeeAnn's limitations, potentials, and needs. They video taped her and me doing what we do. She was accepted as one of eight initial children across Texas, who had been affected by Rubella, into the very first Blind/Deaf school. She had to move to the school and live there, in Austin. It was five hundred miles from our home. The day we took her and her belongings and settled her into her dorm room was the first time I saw my daddy cry.

They said Rubella babies don't live much beyond thirty years of age. She's now forty-nine.

They said a lot of things, but LeeAnn has busted nearly every wall set up by what "they" thought. While she cannot and will never live on her own, because she is probably mentally equivalent to a six to nine-year-old, she is independent. She can dress and feed herself, including heating up a TV dinner in the microwave.  She takes care of all her personal hygiene, including contact lens care and hearing aide battery up-keep. She folds and puts away her own clothes. She can switch the loads from washer and dryer, but she can't completely "wash her own clothes" simply because the settings are too complicated for her to manage. If everything is set up appropriately for her wash, she can wash her own clothes, as well as dry them. You get the idea. She's doing okay.

No, she's not normal. But then again, neither am I. Normal is boring.  Right?

Her dearest passion: Sharks.

Yes, I said sharks. While at the school in Austin, she saw the movie Jaws. She's been addicted to the idea of having sharks ever since. She dreamed up, drew, and planned to have a Shark Center called Amarillo Texas Shark Center Inc. To this day, she believes it will happen. She has actually had a nurse shark.

Sharky, was his name.

Sharky, was his name. He was eighteen inches when Mom and Dad got him from the local pet store. He grew to be six feet long and lived in a outbuilding Dad built for him, in a three-hundred gallon tank. There has not been a shark on this planet loved more that Sharky. LeeAnn fed him every other day and he seemed genuinely fond of her.  We could walk up to his tank, and he would swim around, ignoring us. But when she entered the little building, he stopped and lifted out of the water. Oh, sure, I know he associated her with feeding, but still. It appeared they had a symbiotic relationship that was touching and heart-felt.  Sadly, Sharky died while my parents and LeeAnn were on vacation in Florida. The people who were coming over to feed him found his tank drained and he had essentially suffocated. It seemed he had run into his aerator and caused it to circulate the water outside of his tank, draining the tank completely. It was nine months before my mother could even talk about it. LeeAnn wanted to all Kerry King, Channel Ten News reporter and have an announcement on the evening news. She also wanted an obituary listing. She never understood why we couldn't do either.

All this brings me to today. LeeAnn and I are alone, essentially. Our parents have both passed. This July 4th would have been their 50th wedding anniversary if they were still alive. Dad passed April 2006 and Mom passed April 2014. (yes both in April) I am now legal guardian of my sister and am responsible for her well being.  My goal is to allow LeeAnn to live as rich and full a life as possible. While I cannot make her dream of an aquarium a reality, I can do other things.

Like camping.

LeeAnn enjoys traveling and camping. Mom and Dad traveled a lot. We have been in half of the fifty states and seen many amazing things, like the heads on Mount Rushmore, and LeeAnn has been deep sea fishing off the gulf coast of Tampa Florida. She is quite the adventurer.

My husband and I love to camp. We made our own teardrop camper and go as often as possible. But now we have LeeAnn. So our camping vision has changed, somewhat. While I do not want a huge home-away-from-home Travel Trailer, I do want to be able to accommodate LeeAnn's needs and take her with us when we go. A teardrop trailer is not large enough for three grown people, needless to say. So we searched the internet and found several smaller trailers which sleep four to five people and meets my need for less-is-more.

So, let the adventures begin...

2014 White Water Retro Travel Trailer 177

Here it is. 

The vessel of our adventures. We found the perfect Travel Trailer. A White Water Retro Travel Trailer sleeps three easily. It has a microwave oven, two burner cook top, a potty/shower and lots of storage areas.

This is LeeAnn on her 49th birthday. 

We take painting classes at our local college. She paints seascapes, and ... fish, lots and lots of fish!

Bear Lake

Our first trip is planned the week after July 4th weekend.  Now you need to know, I have a root canal scheduled on Tuesday, and I'm planning on leaving on Wednesday. Yeah, maybe my expectations are too high, but that's all part of the adventure. We'll see if it all pans out. You'll just have to come back and see how all that goes!


We will go to Bear Lake, Colorado for a few days. Three years ago, we took Mom and LeeAnn to Bear Lake for a week. We had a 1969 Scotty Highlander travel trailer then. LeeAnn slept in a bunk over our bed and Mom slept on the dinette/bed. It worked out all right considering (maybe another blog story). I look forward to visiting that beautiful area again.

Then we have reservations in the Rocky Mountain National Park.  From start to finish, it'll be a total of nine days. Barring any complications with my root canal (Lord willing!)

Rocky Mountain National Park

We've never been to the RMNP, so we are pretty excited about this branch of our adventure.

Just to add some spice to our already exciting plans, we have an aunt and uncle, Dorothy and Fred, from the Denver area, who have promised to drop by and have lunch with us one of the days we are in RMNP. She is our dad's sister.  They are in their 80s, so we'll see if they make it or not. Plus a cousin and his wife (their son and DIL) live in Boulder. I'll let you know how all that works out!  I'm thinking a bucket of KFC and some mashed taters, special delivery.

And we have a dear friend, Pam, who camped with us at Bear Lake three years ago, who might come up for a while. She just lost her forty-three-year-old son to a sudden stroke, so I don't know if she'll be up to socializing yet. But we'll see. Everyone is welcome when we go camping!!! It makes the adventure more interesting and generates more stories for me to share with you, my bloggers. So...

I encourage you to stay with us on this blog. Follow by e-mail or subscription, which ever you prefer. But don't miss out on my Adventures with LeeAnn. I promise it will be interesting, if not entertaining.

And by all means, do leave a comment. Let me know what you think of our adventure. Post prayers for our journey. And anything else you feel you need to say, post it in the comments. We look forward to hearing from you.

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I look forward to us meeting again.

Until then, God Bless you and keep you.

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