Been There, Bought the T-Shirt

Rocky Mountain National Park

Adventure #2 After Cuchara/Bear Lake, we headed north to RMNP. This is the view from the top of Trail Ridge Road. ...And do you see the sign Paul is standing next to? 

Yes, my friends, he is standing at 12,005 feet above sea level. No wonder there are T-shirts in the gift shop that read, "Got Oxygen?" Oh my goodness. I had to breath aerobically and pause a lot but I too made it and so I bought a T-shirt that said, "I made it to top." 

LeeAnn got one too, exactly like mine, but she didn't earn it. About one-third of the way up this stack of stairs and asphalt walk, she just sat down. Paul, my RN husband, said she's not gonna make it! I thought if we took our time, she could, but when she sat down. I thought, Yeah, maybe not. So I walked her back down and Paul went on up to the picturesque position and some kind woman took his picture.

What she did get to see was this magnificent Elk. He was just lazying a few feet from the path/stairs we were struggling to climb. 

I couldn't help but think of my oldest son. He lives at 300 feet above sea level in Austin, TX. How hard would this trek have been on him? Of course, he's twenty-three years younger than me but still...

Ah, I digress. We stopped at most of the scenic overlooks and walked around, snapping pictures of the cute chipmunk, the unique birds, the amazing flora and the striations in the granite rock fascinated me so much I took pictures of it too. Downed trees created amazing artistic photos of which I cannot wait to frame. I'll be quiet now and just let you look at the pictures.

It was beautiful. We had never been here in Rocky Mountain National Park before, but we will definitely be back. Although it rained every day between two and four, it still was an unbelievable vacation. We all three had a wonderful time and at least two of us hated to leave. LeeAnn is always ready to go home. She likes her own routine and doesn't have "need" of a vacation like we do. However, she really enjoyed this trip. We stopped in Littleton, CO to see a dear friend on our way up there. (Hi Pam!)  

Monday, we left the park to go see our Aunt and Uncle in Wheatridge, CO (Hey, Aunt Dorothy, Uncle Fred, thanks for lunch!) and on our way home, we stopped to see our cousins in Boulder, CO (Howdy, Bryan, Anne, Carolyn, thanks for the coffee and cantaloupe.)

I have to admit, home looked good when we pulled in at ten-thirty that night, and our bed welcomed us with open arms! I love our memory foam mattress! Our cat was thrilled to see us and promptly and properly chewed us out, although she wasn't alone, exactly. Our son had held down the fort nicely while we were gone. I praised him for keeping the kitchen clean. 

I'm not sure where our next adventure will be, but we have taken a map of the USA and put green map pins on the places we want to go, and two red pins on the places we have been (that is--where we have been together, in this White Water Retro Trailer). It's all a simple matter of time and money. Oh well.  We've got time between Paul's off days and vacation days, we'll be heading out again, and I'll be writing about our...

Blind and Deaf Adventures with LeeAnn

You can count on it.

Adventure #1: Bear Lake, Colorado (near Cuchara, CO)

Did you know...

there is no oxygen at 10,000 feet? Okay, there’s some, but not much for a fat gal like me. I know, I know, I’m not fat, I’m fluffy. But simply walking down to the community toilet causes me to have to sit down back at camp and catch my breath. Whew! 

Still, it’s gorgeous up here in Bear Lake. We have a creek right next to our site that makes a constant white noise (I love that) and pines stand majestically over our heads, while aspens flitter with the breeze just across the way. It’s gorgeous! Did I mention that?

And yet, I had a moment of sadness as I walked the road encircling this camp ground when I first heard, and then saw, the aspens flitter. Their leaves twinkle as they twirl on their delicate branches, because of a light breeze shoving its way through the foliage. I looked up in surprise and wonder, and then my heart broke. LeeAnn would never hear this. And I’m not too sure she could see it either. I’m sure she can see the green scape, of course, and know it is a stand of trees, but can she see the delicate way each leaf dances in its place on the limbs? I really don’t think so.

That saddens me.

But it is how it is for LeeAnn. There are many things in life she will never know. She’ll never know that thrilling sensation when the man she loves passionately whispers her name. The joy that fills a woman’s heart when she realize she is carrying a child. The awe that takes your breath when you look out across the landscape and see God’s handy work in sculpting the earth. These things will never be part of LeeAnn’s life.

And yet, she is happy. There are aspects of this experience she will never…well, never experience. She swats the bugs, but is not terribly bothered by them. She told me she slept great and woke up happy every morning we have been here. She watched with excitement as a thunderstorm rolled in today. She signed about the clouds moving and the rain coming. When it began to rain, she laughed and moved into the camper to continue reading on her Kindle. When the thunder cracked over our heads, she made her happy sounds, “Mum, mum, mum, mum,” waking me from my rain-induced nap.

When we first got here, she told me the trees smell good. I agree. I love the smell of a forest! She giggled last night as she knelt down by the open pit fire and held her hot-dog skewer in the flames.

She didn’t even mind yesterday morning when we woke up and quickly ate breakfast so we could go into Trinidad to have the truck fixed.

Paul and LeeAnn in Service Waiting Room

Oh I didn’t tell you about that? The minute we arrived here at Bear Lake, the transmission cable slipped out of place and we were stuck in neutral! We were not parked yet. I started praying and praying. My husband slid under the truck, in the sandy-mucky-mud and did his best to clean off the cable, enough so that the truck went into Park, Neutral and Drive. It was enough to maneuver the camper into a camp site and disconnect the truck. The next morning we drove the truck on a wing and many prayers into Trinidad, Cookes Dealership! Bless those people. They had it fixed in two hours. We ate lunch at Wendy’s and returned to camp.

LeeAnn took this all in stride. She signed, Truck broke. Men fixed. I told her, “yes.” Did she have any idea how big of a deal that could have been? We’ll probably never know.

Maybe it’s not so bad for her not to experience everything we experience. Those were some anxious moments, for my husband and me.

What am I, Chopped Liver?

or...The Invisible Sibling

Being a sibling of a special-needs person, at least for me, was to be invisible. 

Before either of us went grey!

It's interesting when I search the social medias by using #specialneeds. The hashtag renders many, many supporting groups for moms, parents, social workers, counselors, and teachers of special needs children. But, so far (and I'm not saying I've done an all-inclusive, thorough search) I haven't found anything targeting us siblings.  It's as if we are invisible.

Which is funny, because it's been that way all my life since LeeAnn was born.

It is us, the siblings, who help raise the special needs child. We take up some slack for our parents by entertaining our sibling with simplified games, tuck them back into bed when they crash our slumber parties, and we know in the end we will be the one who takes care of our special-needs sibling after our parents pass. And yet, the world, the teachers, the counselors, and even our parents see right through us as if we were not even there. As if what we do is expected to the degree that it is not noticed.

Oh, I get it. I got it back then, too. Even as a seven or eight year old, I realized her circumstances
were way more interesting than mine. I was a normal, healthy child. I had no special needs, or limitations, other than my near-sightedness. I was fine.

Really, I was.

I wasn't jealous of the extra attention she got and needed. In fact, I was proud of the uniqueness of my situation. Nobody else had a sister who was blind and deaf, with a hole in her heart.

I had boldly announced this as I circled my third-grade classroom the first day of school when our teacher prompted us to make the circle and introduce ourselves. I remember the teacher's reaction was one of shock and possibly embarrassment. She said, "Well, you didn't have to say all that."

I thought, "Why not? That's who I am."

In my college speech class, when I was asked to write a speech telling something interesting about myself, I wrote, "The most interesting thing about me is not actually about me. It's about my sister..." I proceeded to tell LeeAnn's story. The students were, indeed, fascinated.  Because it is fascinating how LeeAnn has grown up and is thriving.

I get that!

But do I have to be invisible?


When LeeAnn was around three, people came to our house and interviewed Mom. Later, there was an article in the newspaper about LeeAnn. It had a large picture of her, with her Orphan-Annie curly head of hair and watery-blue eyes, staring, cross-eyed, at the flame of a candle (She loved candles back then. Her bangs were always singed slightly from her long gazes at a lit flame. More about that in another blog.). And it mentioned me! Well, it mentioned LeeAnn had an older sister named Linda.

Yeah, that's not me.

If that wasn't frustrating enough, kids at my school came to me and said, "Hey! There was an article in the paper about another kid like your sister..."

"That was my sister," I retorted. "They got my name wrong."  After all, how often is your name mentioned in the newspaper when you're a kid? Once, for me, and they got it wrong.

Another time, we drove to Oklahoma City to meet with a well-known doctor who had a program for special needs children like LeeAnn. My parents were very serious on the drive down and I was instructed to be on my best behavior. So I tried to be.  But, when the man walked into our sterile, plastic chaired waiting room and my mom and dad introduced themselves and me, the man was so focused on LeeAnn he completely missed what my dad said. You see, Dad said, "...and this is our daughter, ..." but the man heard "...this is Barbara."

He continued to call me Barbara for the rest of the visit. I was so embarrassed. When the doctor wanted to get me and LeeAnn out of the room (you know, adult talk), he said, "Barbara, will you take LeeAnn out and show her where the water fountain is? ... Barbara...Barbara!"

Oh! me!  I responded and took LeeAnn out into the hall.  I wanted to crawl under the tile and hide in the car. I had wanted to make a good impression, as my mother had emphasized, but I felt like I came off as an idiot.

Later there was another article about LeeAnn attending the school in Austin. I wasn't mentioned in that one at all, which was fine with me, because they probably would have gotten my name wrong again. It was less frustrating to not be mentioned at all.

***Flash forward to today***

Okay, so that was then and this is now. I've grown up and I'm fine. I have raised four children. I have ten amazing grandchildren (at this writing, three are still in the oven) and a wonderful husband, my in-laws love me, my church family loves me, my friends love me, and I am a published author.

I have a blessed and happy life. I've made a name for myself. I am not invisible...

This blog is my opportunity to reach out to other siblings.

This is the portrait Mom and Dad had made
for their fortieth wedding anniversary. July 4, 2004.

It's never easy unloading the baggage of the child within. I call her Little Lynn. She's still very insecure, seeking her own moments for attention and love. I know Mother did her best with what she had to work with, as did Dad.

Somehow, I got left out.  Just like this "family portrait" they had made in 2004 for their fortieth wedding anniversary.

...and what's funny about that is LeeAnn was the one who said to our parents, "Lynn!" Meaning: Lynn should be in the family picture. I was surprised and happy when Mom called and asked me to join them for a family portrait. It was later I learned they had already had one sitting before they realized (or was reminded) I should be included.

Fortieth Wedding Anniversary, July 4, 2004

As we load up our travel trailer and head out on our adventure for more altitude and less attitude...and cooler temperatures in Colorado, I want to emphasize this one thing: I'm not telling you all this as an invitation to my pity party! No way. I'm just reaching out and sharing my story. I am sure other siblings completely understand and have stories of their own. I hope this reaches some of them and I also hope they, and you, will comment below. I'd love to hear what you think. I'd love to hear others' stories. Surely I'm not alone, or invisible.

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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