I Think It's Going To Rain Today

Oh! the things I have thought of to blog about over last couple of weeks. I haven't dropped off the planet! Promise. Just been crazy busy with work and yard-scaping and funerals (yuck) and family events (Hailey turned FOUR) and etc., etc., etc.

I have had ideas to write about. I've gone over words. I've almost decided to write about one of the different topics that seems anxious to get out of my head. However, I'm not going to write about a single subject that has crossed my mind.

I'm going to write about me.

I have been diagnosed with a rare brain disease called OPCA. According to the National Institute of Neurological Disorders and Stroke:

Olivopontocerebellar atrophy (OPCA) is a term that describes the degeneration of neurons in specific areas of the brain – the cerebellum, pons, and inferior olives.

In other words, my brain is slowly going to quit working. If all goes the same as other patients, I'll eventually land in a wheelchair and lose ability to speak, etc. Life expectancy? They say 15-20 years from diagnosis.

Worse things have happened to better people, right? Ugh. I still get a stomach ache when I think about my future. It freaks me out that there is a 50% chance that my kids will have it. I know all the right words. "You didn't know.", "It's not your fault.", "They are not mad at you." I still feel guilty. I still feel overwhelmed with sadness. I still wish that I could take the worry and fear and stress and dissolve it into nothingness.  I just feel guilty.

From the time I was pregnant with Goose in 1986 until just after Tanna was born in 1989, I lived in Ojai, California. I LOVED it there. One of my favorite people in the ENTIRE world is Michele Skankey. I met her in Ojai. Michele, her husband Wayne, Mark Deason and Mark Allman were in a band together. Her boy Nathan is the same age as Tyson and she and I were LARGELY pregnant gals at the same time with Casey and Goose.  Michele can sing. I don't mean just carry a tune. She can SING.

Back on subject

In 1988, the movie Beaches came to the theaters. Because I LOVE Bette Midler and because it's a perfect chick flick and because I needed to get the crap out of my house, Dawn, Michele and myself went to see Beaches. I'm getting old and there MAY be other gals that went, but Dawn and Michele have stuck in my brain as my sisters in crime for the event.

Loved it. Sappy. Sweet. Predictable. Emotional. LOVED it.

IMDb describes the movie as:

A privileged rich debutante and a cynical struggling entertainer share a turbulent, but strong childhood friendship over the years. 

I suppose that is a decent synopsis of the movie. The debutante, Hillary, is played by Barbara Hershey and Bette Midler embraces the character of C. C. Bloom as an entertainer in every degree.

In the movie, Hillary is diagnosed with viral cardiomyopathy. This requires a heart transplant if she is to live. Having a rare tissue type, she realizes she will most likely die before a heart is found. Hillary is sitting in a medical reference library when the Bette Midler begins to sing "I Think It's Going To Rain". The song wraps up with Barbara Hershey staring blankly ahead as she is struck with the gravity of her illness.

This scene has always stuck with me. It seemed so sad. I used to wonder what it would feel like to hear the words that your life has just changed enormously. When I learned the wheels were coming off my own bus, that song is the first thought that went through my head. It thundered like a freight train. Trust me.

I searched and searched for the version I wanted to post. I found a direct link of the song from the movie, but it is poorly made. I settled on this one. Not happy with the "look" of it, but the sound is more clean with much less background noise.

I have always taken pride in being a "smart" girl. I've always been independent. I HATE asking for help and will find every avenue possible to avoid asking.

It stinks that it has become necessary to ask for help with something as simple as walking on uneven ground or maneuvering up and down stairs. I am angry that my family automatically waits for me and lifts their arms for me to hold while I shakily walk and THEN I'm angry if they don't and I have to ask them for aid. I see people playing basketball or running or biking or dancing and I'm jealous. I mark days in my mind when I say "I'll never do THAT again."  And it makes me sad.

So many people have shown me love and support. I am such a lucky girl. I have never denied it. I am surrounded by friends and family that love me EVER so much. I have received calls and cards and messages and offers of help and thoughts and prayers all to ensure that I know that I'm loved and that they are so very worried about me and my family. Me too. 

So, yeah, right now I'm angry and sad and frightened. I'm getting pelted by rain and can't move fast enough to escape. Instead, I have to charge into the storm with fists held high and pray that I find the courage to fight the good fight. And win.

Be Careful What You Wish For

I have a lawn to mow. Dog poop to scoop. Laundry to do. Walls to wash. Rooms to vacuum. Instead, I felt magnetized to my computer. To my blog page. To this posting.

Somewhere in all my "words" I have found a sort of therapy in writing. I think it's just getting stuff out and letting go, but whatever it is, you're cheaper than therapy and I don't have to hear how messed up I am. Win-win for me! And since you are cloaked in anonymity, I don't have to be embarrassed by my thoughts. Chalk up another win! AND you don't have to read my ramblings if you so desire. See? We ALL win. I get more wins, but it IS all about me anyway, right?

A disease runs dominantly through my biological mothers side of the family. It's a disease that hits your brain. It's called OPCA and I have been showing symptoms of it over that last few years. Little things. I don't run any longer. I can't. My body doesn't work that way. I stammer in my speech. It requires cognitive thought to master stairs. Blah. Blah. Blah. The list is long and cumbersome. In the whole scheme of things, who cares? It wasn't like I was some high jumping, run everywhere kind of girl to begin with. Right?

Who needs to close the garage door and try to jump over the sensor just to end up ramming their head into the garage door and rocketed to the ground so hard that their body bounces upon landing and looks around to make sure NOBODY has seen the theatrics and climb humbly into their jeep humiliated beyond words and then tells the family to gain a bit of sympathy and have to leave the room because they are laughing hysterically at you? Not me. I don't need that.

I went to doctor and was referred to the University of Utah to be seen by a neurologist. I had to gather all my medical information that I could find, fax it over to them, then a team of VERY qualified doctors go through the cases and the physician best suited to take your medical dilemma gives you a call and gets the ball rolling. Doctor Summer Gibson is my new best friend.

Young. Smart. Empathetic. Did I mention she was smart?

My family attended the appointment with me last Tuesday. I'm not sure if the office workers were prepared for the Deason entourage. There was standing room only as I spent about an hour with her asking me all sorts of questions and then pushing here, pulling there, "let me watch you walk", "can you feel this", "can you do that".

I kept my eyes focused on her. At one point when I "performed" poorly on a test, I glanced over to my family. I lost it for a minute. I hate seeing the fear in their eyes. I DESPISE that I am putting them through the pain associated with my ability to do less and less.

When the doc was done questing and testing, she said "Although you show many symptoms of OPCA, you have many that are not classic OPCA. You have symptoms of other brain diseases." I wasn't prepared for THAT statement.

I have dreaded getting an actual diagnosis of OPCA. It's such a nasty disease. But when I asked what she might be looking for, her only response was "they are diseases you don't want to have." Ugh.

I left with even MORE questions and less answers.

So I have cried and worried and fretted and raged and pondered and wept and hoped and believed in better this week. I have tried not to feel guilty when my family struggles or cries or yells.

I haven't been afraid of much in my life. I fear this. At times I am frozen with fear. I learned to fight many, many years ago. I'll continue fighting. I need my family and loved ones to know that. To believe that I won't give in. I still dream of a fairy tale ending that finds me old and feeble watching my grandkids rule the world. I plan to be a "based on a true story" event that requires good popcorn and a large coke.

How Great Thou Art

I saw this performance on the Country Music Awards last year. I fell in love with it. I put it on my Ipod. I ALWAYS have my Ipod on shuffle so when this song "magically" appears I pause whatever I'm doing to hear every minute of it.

I am not outwardly religious by any description of the word. Denise used to tell me that I walk a "fine line between class and white trash". I thought that was HILARIOUS but then she would say "Whenever I need spiritual advice or comfort you are the one I turn to".

So I assume that spirituality is somehow an ingredient in my melting pot of emotions.

I do know that this is HANDS DOWN my favorite religious song. The one thing I miss from my daily Sunday ritual is the gospel music.

Last weekend Mark took me on the motorcycle. We left Provo, went to Wallsburg to visit Rays' grave and then headed on to an adventure.

I love to ride the motorcycle. I love the sun. I love the wind. I love the smells. I love the freedom. I love the alone time with my husband. I have secretly desired a motorcycle of my own. I make do with the top off my jeep and a seatbelt securely around my waist. With all the texting and driving going on I worry that Mark is going to be hit by some dork who isn't paying attention to the road.

Off my soapbox and back to what I was writing about.... (Put the phones DOWN people).

We left on our little expedition. BEAUTIFUL.  We wound through mountains. Past Lakes. Stopped at a waterfall.

B E A U T I F U L. Again.

Sigh. How do I describe it?

Fast forward to this last week.

Dawn took me on vacation. She decided that I need a bucket list and she was going to contribute things for me to do. So she rented a car and took me to Southern California and up the Pacific Coast Highway.

B E A U T I F U L

Our first stop was in Vegas. Mark had taken his motorcycle down to Vegas. He wanted to avoid I-15 so he took the scenic route.  He meandered through Zions National Park. Across Devils Backbone. To the Grand Canyon. He was on the motorcycle 15 hours +.

Dawn is married to Mike (who is my age) and Mark's brother as well. Mike drives long haul and planned a run in his rig through Vegas. He was able to meet us there as well. We all dressed in 1970 attire and hit a nice dinner. I think Gerald celebrated his 40th in style and surrounded by many people he loves.

Sunday morning Mark headed back on the bike, we dropped Mike at his rig and headed off on our adventure to Cali.

The car was filled with girl talk and laughter.

Our first stop was in LA where we roomed across from Disneyland. I haven't been to Downtown Disney before so we shopped and ate and ended our evening with fireworks from the theme park.

The next day we went to Catalina Island. When I grow up and become rich and famous you'll be able to visit me there. I was BORN to live on a beach. Extra sun. The ocean. Sand. People. Shopping. What more can a girl ask for?

The following day ended in a Dodgers game. I WAS SO EXCITED! Witnessed a home run in the first inning by a Mets player and then cheered the Dodgers into victory.

FINALLY I have arrived to "why the crap did she title this blog How Great Thou Art and then write about vacation getaways?"

Dawn and I jumped in the car and hit the Pacific Coast Highway. Every turn we made one of us stated "This is the most amazing thing I have ever seen." It was so pretty. I LOVE THE OCEAN. If you haven't seen the ocean through Northern California? Get in your car and start driving until you hit the PCH. You won't be disappointed.

Goose asked me a couple of weeks ago if I believed in God. I paused for a moment and answered as honestly as was possible with "I don't know."

I still don't know. I see the beauty that surrounds us. I think we are so fortunate to live in a country that is so diverse in nature. I think it's amazing that we can see the ocean and put our toes in the water and then drive 30 seconds and smell the fresh scent of pine trees because the mountains are looming in the background.

When we passed through Carmel, we happened upon the Tour d'Elegance. Pebblebeachcouncous.net describes it as:

The Pebble Beach Tour d’Elegance presented by Rolex is an annual driving event that delights entrants and spectators alike.  

Initiated to showcase the elegance of the automobile in motion, the Tour also underscores the early history of the place that is Pebble Beach. Decades before golf links were laid out along the edge of the Pacific Ocean, this area was known for its scenic drive, winding for miles through pine and cypress forest, dancing alongside dramatic cliffs and leading, ultimately, to a beautiful crescent-shaped bay. 

The traditional Tour traces portions of the original 17-Mile Drive, traverses nearby mountains and valleys, and pauses for a time in charming Carmel-by-the-Sea. This year, for the first time in 10 years, the Tour will add a lap around Mazda Raceway Laguna Seca. Tour participants enjoy a catered gourmet lunch, a champagne celebration at the finish and commemorative gifts. 

We found a parking spot and made our way to the cars. The owners were in having their lunch so the cars are lined two deep through the district on both sides of the road. They are all vintage vehicles restored to their original grandeur.

It was at this time that I contemplated the abilities of man to create wonder. If God created Man in his own image, makes sense that we can create beauty as well, doesn't it? I found beauty in the art from the street vendors in Sacramento. The architecture throughout California left me breathless. The engineering of the Golden Gate Bridge is astounding.

So, Goose, I think I wasn't entirely truthful with you. I believe in "something". I believe mostly in humanity, but I choose to believe that our intelligence and our desire to create beautiful is a gift from a higher power.

Therefore, when you see something beautiful...when you do something amazing...when astounding surrounds you...pause and think "how great thou art."

Written In My Heart

A few years ago I did a breast cancer picture and titled it HOPE.  On the picture I put a quote from Norma Vincent:

What is hope? Hope is wishing for a thing to come true: faith is believing that it will come true. Hope is wanting something so eagerly that – in spite of all the evidence that you're not going to get it – you go right on wanting it. And the remarkable thing about it is that this very act of hoping produces a kind of strength of its own. 

I don't have faith in many things. Is that jaded? I don't know. I've found in MY life that just sitting and believing that something will come true doesn't seem to do me a lick of good. I'm sort of the "go out and get it" kind of gal. So I hope for things and then I go out and get those things. It wasn't until I read this quote that HOPE made so much more sense to me. The final sentence that states "the very act of hoping produces a kind of strength of its own" is what nailed it for me. 

I think we all hope for "a better tomorrow".  I think that hope is what gives us the strength to go out and create our tomorrows. I have had a couple of weeks filled with dread and worry and fear. I have let my strength ebb and hopelessness has filled up the empty spaces in my heart.

The other day a friend of mine shared:

Whether we like it or not, hope is written so deeply into our hearts that we just can't help ourselves, no matter how hard we try otherwise.

This simple statement has helped me "draw up my bootstraps" and get the fight back in me that I need in order to end the fear induced paralysis within me. I don't just hope for change anymore. I have gathered my strength to cause change. It's in ME to do it. Therefore, it WILL BE DONE.

Whimsy

A couple of weeks ago, Jaden, Daulton, Shelby and myself were in the jeep headed to the store. Because it is dead of summer and because I don't have an air conditioner and because I WORSHIP the sun, my top is off my jeep. Everywhere I go I feel the wind in my hair and the sun on my shoulders. Everyone complains about the heat. I don't. I love the sun. The hotter the better. I'm so happy in this weather!

Okay. Back on track. We were driving down the road and a sprinkler was spraying into our lane. There was nowhere to turn, so we went through it. We all screamed and ducked and got hit by the water. Then we laughed out loud.

Of course it triggered thoughts in my head.

Diana is a GREAT mom. When she has the kids they always look as if they stepped out of a magazine. Perfect hair. Perfectly matched clothes. Clean. Okay, let's be honest here, those two kids are the STINKIEST kids. Ever. But their cuteness makes up for the natural odor that befalls them, so it's an even trade.

Bill and Haily get dropped off at Grandmas house and if Diana and Tyson have learned anything about parenting, they have learned not to put the kids in their nice clothes when they visit me. Shoes are optional. A messy kid is inevitable.

We walk in the mud puddles. We dig in the dirt. We plant flowers. We weed the flower beds. We play in the sprinkler. We eat Otter Pops until the juice is oozing out of our t-shirts. I'm happy. They are happy. Win win situation.

Do you remember being a kid? Do you remember running and playing and laughing and shouting and dancing and singing without a care? Going through the sprinkler made me think of that. Watching the joy that Hailey and Bill show when they walk with me THROUGH the mud puddles instead of around them warms my heart clean through to my soul.

I said it before in another blog:

I'm not old (yet) but my time of wishes is more behind me than in front of me.

There will always be gardening and housework and bills to pay and dishes to wash and laundry to do and windows to wash. BUT I refuse to become stuffy and boring and grown up. When I can I will find that moment of whimsy and embrace it. I'll jot it down in my happy book and remember that moment forever.

Here are some things I highly recommend:

• walk through the mud puddle  • sing out loud • take your shoes off and feel the cool grass between your toes • put on that swimsuit and go to the pool. Listen to the pure joy that the kids share naturally • eat Otter Pops • buy some Converse tennis shoes and ROCK them. If you REALLY feel adventurous buy them in a blue or red or purple or multi color. Just wear them • walk through the sprinklers that cross your path • eat with your fingers. Don't even get out the silverware • skip rocks at the lake • turn off the air in your car and roll down the window • lay on your back and count the stars or make shapes out of the clouds or watch fireworks or make out with your soul mate. • talk to your kids about trivial-it-doesn't-really-matter stuff (because it really DOES matter most in the end) • play hopscotch or jacks or jump rope or hula hoop or kickball or Speed or tag or hide and seek • eat bubblegum and blow a REALLY BIG bubble • get in a food fight until your clothes are covered in mashed potatoes • make your kids roll their eyes at you • say "I love you" a lot

Forget not that the earth delights to feel your bare feet and the winds long to play with your hair. ~Kahlil Gibran

It's All About Perspective

I have always believed that in a fight, both parties are right. I think most arguments are based on emotion, and how can you be wrong if you are hurt or angry or lonely or confused? I am always telling my kids "take the emotion out and deal with the facts". Usually the facts aren't NEARLY as overwhelming as the emotion of the moment.

Daulton and Shelby have been best friends for quite a few years now. Mark and I always pushed for Goose to date Daulton. She was such a perfect fit for our family. We joked with her. We teased her that if Goose wouldn't date her that I would dump Mark and she could marry HIM so that we could guarantee that she would be a Deason. I'm SURE she is grateful that Goose stepped up and proposed.

I really didn't know for sure if she was interested in Goose. We just loved her and wanted her in the club. At Christmas time a few years back Shelby and Daulton had tagged along while I ran to Sam's Club to get some pictures developed. Above my piano in my "Pooh" room I have a wall with an 8 x 10" photo of each of the kids as a baby. Directly below their infant picture I put a current picture of their happy faces.

I had gone to Sam's to grab their pictures so I could update my wall and when the girls pulled out the picture of Tyson I was going on and on about how handsome Tyson is. (Which he IS terribly handsome) when Daulton said "Yeah, Tyson is handsome, but (she pulled out the pic of Goose) Goose is HOT".

I was so excited I about wrecked the jeep.

There has been a standing rule in the Deason home. This rule was VERY STRICTLY established by my boys. There was to be NO dating of friends. NONE. The girls honored the code. They have NEVER dated the friends of my boys. On the other hand, Tyson is with Diana who happens to be best friends with Tanna and Goose is happily married to Shelby's best friend.

I told Shelby that Goose really SHOULD ask Daulton out. Shelby talked to Goose. Goose talked with Shelby. Shelby talked to Daulton. Daulton talked to Shelby. The stars all aligned and Goose was dating Daulton.

Then the storms hit.

Things became complicated in the trifecta of Goose, Daulton and Shelby. There came a time when things were terribly tense and difficult and hard for each of them. I was worried about all of my kids.

My back porch is directly below my bedroom window. We use my window to access my roof. I (forcefully) told the kids to get out the window and sit down. I needed to talk to them.

We sat on the roof of the patio and I made them each tell me what they saw. They saw the trampoline. They saw the neighboring yards. They saw the wishing well in my yard. They saw the playhouse. They each stated the different items that they viewed.

They were each correct.

I talked to them about perspective. I shared my belief that in most emotional situations each party is right and that it is up to us as human beings to see the other side.

I don't know how much impact I made. Somehow they worked it out and came to terms with the emotions that were boiling inside of each of them. Daulton married Goose. Daulton and Shelby remain best friends. Goose and Shelby's relationship is still cemented in love.

I think EVERYONE should climb up on their roof from time to time. I believe we should all look around and see the world with different eyes. I am convinced that if we gain a different perspective during difficult times that most of the drama melts away and love will replace anger and hurt and fear.

Climb on your roof. What do you see?

Learning to Be Still

I've been a fighter my entire life. Nothing has ever come easily to me. I entered this world fighting and I am positive that I will exit this world with my fists held high.

Sometimes I feel like I am constantly on alert, that I always need to be aware of what is going on in order to run interference for myself or someone I love. Marilyn says that I throw on my cape of fairness and I feel it is my duty to "save the day". Makes me laugh, but she's probably right. I have always felt I was strong enough to fight battles that others are too weary to take on themselves.

A few blows have come my way and I'm finding myself in a position of having to be still and think before I act or react. A friend of mine shared the quote:

 "To the mind that is still, the whole universe surrenders."

I've thought about this quote HEAVILY over the last couple of months. The last two weeks I have thought about it every single day.

I'm learning to be still. I'm learning that I can't control everything. I'm learning to allow myself to depend on those that love me. I'm learning to forgive unfairness. I'm learning. I'm learning. I'm learning.

I'm succeeding. I'm failing. Depends on the moment.

I want the universe to surrender to me. I desire the beauty of peace to envelope me and embrace those I love. I long for comfort to wrap it's arms around us and never let go.

So, I will learn.