My Minds Eye

About a month ago, Mark and I watched "The Theory of Everything". The synopsis of the movie on Imbd is:

This is the extraordinary story of one of the world's greatest living minds, the renowned astrophysicist Stephen Hawking, who falls deeply in love with fellow Cambridge student Jane Wilde. Once a healthy, active young man, Hawking received an earth-shattering diagnosis at 21 years of age. With Jane fighting tirelessly by his side, Stephen embarks on his most ambitious scientific work, studying the very thing he now has precious little of - time. Together, they defy impossible odds, breaking new ground in medicine and science, and achieving more than they could ever have dreamed.

I did have a hard time watching the movie. I lost a dear, dear, DEAR friend to Lou Gehrig's disease (ALS) and as I watched Stephen's decline I was constantly reminded of the struggles Denise faced. However, as per my norm, my thoughts turned towards my own disease. Interestingly, many of my symptoms run parallel with ALS and I find myself constantly being reminded of the fight Denise had to face and drawing on her strength and wisdom in the eye of the storm.

There was a point in the movie that a wheelchair-bound Hawking, with the assistance of a voice synthesiser, was asked to attend a lecture in America where he would be receiving an award. While on stage at the lecture, Stephen sees a student drop a pen. There is a moment that he imagines getting up to return it and the movie plays as if he can. He stands, walks down the stairs off the stage, stoops down, retrieves the pen and gallantly hands it to the young woman. The movie slams back to Mr. Hawking still bound to his wheelchair. His emotions are very clear as he struggles with the fact that he cannot do as he wishes.

That scene plays over and over and over in my mind.

On May 24, I attended a fantastic, wonderfully, beautiful wedding of a "little" girl that I love so very dearly. Alissa and Cody had a never-empty-dance-floor set up. I love music and love to dance and found myself on the floor swaying to the music. I miss dancing. I miss it so much. However, I am not able to get to the dance floor without aid and certainly could not be left to my own resources once getting to the floor. I found myself saying "Don't let go of me". ALOT.

That night I had a dream about running. I was running and jumping and laughing with glee. Then I woke up. And was hit with the realization that, yeah, I can't run. And I never will again. I can't jump. And I never will again. I can't dance. And I never will again.

And I was so, so, so sad.

My mind isn't ready to admit defeat. So I keep stammering and stumbling forward and try so very hard to maintain a smile on my face and to treasure every movement as if it might be my last.

When Stephen Hawking spoke at Cambridge he said:

However difficult it may seem, there is always something you can do and succeed at.

I've learned that my own successes are measured in small increments and certainly do not fall in the same category as "normal" successes.  However, they are mine. If a "good day" is achieved by getting out of bed, putting on make-up with shaky hands and making sure that I smile widely to the gal at the pepsi store? That is a good day.

Once again, Stephen nailed it while addressing Cambridge:

I might just dance after all. Even if it's just in my mind.

Defying Gravity

Each year for Christmas, I gather pictures that the kids have taken throughout the year and I put them to music.  I make a movie for us to watch Christmas morning. Much time is spent picking the song that fits the year that we are placing behind us. I then make sweatshirts to go with the "theme" that I have established.

I really don't know how much the family is endeared to this idea. I've learned that (of course) it's all about me and I do this because I love it and it gives me time to pause and think of events throughout the year.

I lost Pat this last year and the play "Wicked" is seared in my heart as "ours". So when the time came to pick my song, gather pictures and begin the movie-making process, I went to iTunes and found the song Defying Gravity and began my project.

I try very hard to find the part of the song that I want to "underline" in my creations, and this time I landed on the lyrics:

If I'm flying solo at least I'm flying free.

I don't know if this statement "fits" with the rest of the family, but it sent a beacon to me. And I followed.

On August 19, 1984 I became a mother. And I have never looked back. I haven't been one to give "worldly" gifts to my kids. Nor, have they been raised to give much credence to the trappings of living a lifestyle that invokes power and wealth. From the beginning of time, they were raised to respect the people that surround them and to spend their energy and finances to help those in need.

My children were taught to be independent.

As I grow older, I question what the crap I was thinking.

I should have raised children that would never leave my side. They should be needy and dig their claws in while they cling to me with desperation.

Sigh. They're not.

Because of their strengths, I'm learning to stand alone. I'm learning to dig inside for confidence and self-worth; to pull out my own strengths and leave my weaknesses sitting on the sidewalk unnurtured.

Buddha said:

"You yourself, as much as anybody in the entire universe, deserve your love and affection."

I'm learning to fly solo. And it's not so bad.

Making It Count

I love that my facebook page is full of moans and groans from the peeps my age turning the dreaded big 5-0. I feel the excitement shared through the posts filled with pictures of new grandbabies that are coming our way. I love to see the "kids" I know having babies of their own and secretly stalk each one of them to make sure that they are on track to be great parents.

Last week we celebrated Uncle Mike's 50th birthday. As I pondered what gift would hold any meaning for this epic event, I ran across this statistic:

According to USA today, the life expectancy for a female is 81.2 years; for males, it's 76.4 years. 

I did some math and came up with these figures:

A woman has (give or take) 4222.4 Saturdays in her lifetime.

A man has (give or take) 3972.8 Saturdays in his lifetime.

I've turned 50.

That means that I only have 1622.4 Saturdays remaining and Uncle Mike is held to the statistic of 1372.8 Saturdays left to hunt, fish, mow lawns, repair household items, clean vehicles, watch kids play soccer, read magazines, hike trails, fight with spouses, argue with kids, paint kitchens, make spaghetti.

I decided to give some perspective to our situation. I went to Hobby Lobby, bought a large Mason jar along with some river rock and counted 1373 of those rocks and placed them in the jar for Uncle Mike.

And that's what I gave him for his birthday.

It was interesting to count the rocks out. As I was counting along, it struck me how quickly time passes. We all say it. It's a blink of an eye, and your kids are grown and making memories all their own. You gain weight, lose hair, hide grey hair, curse wrinkles, wear reading glasses, listen to "classic" music, own antiques that are simply remnants from your youth, begin statements with "I remember when....", talk with disgust about "this generation" and THE WORSE THING EVER? Talk about your dog like you used to talk about your kids. AAAAAAUUUUUUGH! 

I don't have many Saturdays left. I, for one, vow to spend more time at the pool, sit on my porch swing every day this summer, go to the park with my grandbabies while I still can, read a few more books, sip some lemonade and make sure that those I love know of the feelings in my heart.

I think that is a nice bucket list. 

Just A Little Bit Of Magic

Yesterday Shannon and Bayley kidnapped me for a couple of hours and took me to see the new Cinderella.

There has been some heart wrenching, gut churning, sleepless night kind of stuff that is going on in the Deason home. It didn't take long before something struck me and I spent the rest of the movie contemplating what lies ahead.

When Cinderella's mother was dying, Cinderella was told "Have courage, be kind." She was told "Where there is kindness, there is goodness. Where there is goodness, there is magic."

I'm not gonna lie. I can use some magic right now. Remember kaleidoscopes? A kaleidoscope is made from mirrors with bits of glass along with beads and/or pebbles. When you look through the opening of the kaleidoscope, light reflects on the mirrors and colorful patterns are created.

That's how pain and stress feel right now. What I see are the shards of color that represent each "feel" that I am feeling and I am not able to see the final image. Beauty is beyond my scope right now.

Sigh. That sounds so dramatic, doesn't it?

Pain is an interesting thing. It encompasses all thought. It takes on a living form and shrouds all that is good. You eat pain. You sleep pain. Days become weeks that become months that become years and before you know it, it feels like a lifetime of pain.

I don't have courage anymore.

I imagine I'll "pull up my bootstraps" and get it all together again. However, right now, I want my fairy godmother to wave her magic wand and with a "bippity-boppity-boo" mice get turned into horses, pumpkins become beautiful golden carriages and my tattered dress becomes a beautiful gown fit for a princess.

Cinderella was prompted to:

“See the world not as it is, but as it could be if you see the world with care and kindness and just a little bit of magic.” 

I hold my own magic wand. Right?

And The Angels Close Their Eyes

It's hard to take responsibility for our own choices, isn't it? I hear the blame game constantly. Victim. It's not an honorable title. Isn't it more inspiring to hear the story behind overcoming abuse or neglect or molestation? We all carry hurt on our shoulders. It's not permission to act on that hurt. It's a license to state vehemently that "the cycle ends here".

When my kids were young, I tired QUICKLY of lame excuses for bad actions. I found myself saying "What were you thinking?" or "What the crap happened?" or "Why did you do that?" but what really threw me into a tailspin was knowing that they knew better.

They DID know better. I had told them over and over and over from the beginning of time not to do something, touch something, say something, be something. So I knew they knew. Dumb kids, right? It didn't take me long to figure out that I needed to change my tactic. I went with "Tell me what you did wrong and what you're going to do to fix it." As they got older and able to write, I would make them write an essay on that subject. Oh man. To say they hated that punishment would be an understatement.

It was my belief that if they knew that I knew the specifics of the whys and hows they wouldn't get away with trying bad behavior again because I KNEW that they knew better. They told me so.

The other day I was at the High School to pick up Jaden and Tim McGraw's Two Lanes Of Freedom was in my cd player. The song Number 37405 was playing.

He turns in them prison clothes, and stands there at the fork in the roadAnd mama prays and waits while he decidesAnd the angels close their eyes...

I think that angels are closing their eyes right now. I believe that they are waiting for our world to step up and let humanity prevail. Simply make the change in your own life. You'll be surprised how it changes your world.

Keeping Focused on the Middle

It came again. My birthday. This wasn't just ANY birthday. I turned 50. What? FIFTY? I thought I was fine. I thought I was handling it. I thought all the right things. I was OH SO WRONG.

When I think about my life, I actually enjoy my age. I love the freedoms that are placed at my feet. I still have opportunities and choices and plans and dreams and desires. And now they are more grounded to me and my beliefs.

After I was diagnosed with OPCA I hit a brick wall for a "minute". I'm unsure what the disease is going to bring. I won't know what "really" will happen to me until it happens. I have biological family that has this disease, however, they have decided that it is in their best interests not to know me. This leaves me with nobody to communicate with about what to expect. Resources are limited and I have yet to even find a forum online to provide me  with any knowledge of what my future holds. The medical tracking of this disease is pretty sparse and I find myself worrying and wondering about what lies ahead. I found myself saying quite often that "I feel like my future is filled with everything I have to do and not with much of what I want to do." I don't want a new house without stairs. I LOVE my house.  I don't want a new vehicle. I LOVE my jeep. I want to run again. I want to wear high heels again. I want to walk without clenching my hands with sheer concentration in order to walk "just a little wobbly".  I want to do crafts and garden and remodel my house with my own hands and speak clearly and paint my own nails and go back to college. Whew. There. I said it.

Yes. I want to turn back time and do those things again, and memorize the freedom.

Dawn gathered all the girls for a surprise get-together the Friday before my birthday. She and Shannon took me to dinner (of course I had crab. Duh. Who turns 50 and doesn't have crab?) and then (after Dawn got us lost and Shannon was left to stand in the cold with me while I shivered and stumbled and NEARLY DIED from frostbite and Dawn ran to the end of the block to see if she could see which way Main Street was and coming back to us CLUELESS and we had to ask directions from a guy who, I'm sure, thought we were nuts and pointed EXACTLY the way Dawn had just come from with Dawn proclaiming LOUDLY that "I looked one way but it was the other way.") we went into Keys On Main in Salt Lake and ALL of the girls waiting for mom. We danced and sang and laughed and hollered and held hands and hugged and had an ABSOLUTELY perfect night.

Super Bowl is my most favorite day of the year. I love the anticipation. I love the food, the smack talk, the cheering, the commercials. We have a HUGE gathering every year with more food than Thanksgiving. We keep both televisions on the game and my house roars with each touchdown, flag thrown and funny commercial. Sigh. Incredible.

There are years when my birthday actually falls ON Super Bowl Sunday. But whether it's that day or not, my family always has a cake with candles for me to blow out and I pretend that the whole gathering is just for me and not for a bunch of guys in tight pants throwing pigskin around.

True to the past, my family had the party for me. They brought me gifts and sang ferociously for my benefit. Tyson and Shelby bought me a new MUCH NEEDED computer chair. Tyson came and put it together for me and Haily came busting down the stairs to ask me if I liked my new wheelchair. Thanks Hailey.

All this leads me to Monday, February 2, 2015. My birthday. Jaden had an appointment with his orthodontist in the morning. After we made our way home, I went upstairs to the couch and Jaden hit his room to game and "get the heck away from mom" time.

I sat on the couch contemplating "What's ahead." And I got myself worked up about the unknown. I was so busy with the worry-ing stuff that I forgot to focus on the anticipation stuff.

This is my reminder that you don't have to run or craft or garden or remodel to experience joy and happiness and peace.

I received MANY facebook birthday wishes. I LOVE my facebook birthday reminders. I love that people I know took a few seconds of their day to tell me that they are thinking of me. I love the messages and good wishes and tributes and thoughts and pictures and smiley-faces and exclamation points. I love the surprise I get when my phone shows the little red number by my facebook icon exclaiming that I have a message or notification.

I love when my grandbabies wrap their arms around me and tell me how much they love me.

I love Diana's little scream when she gets excited or scared.

I love the random texts that Tyson sends with thoughts or pictures.

I love phone calls from Goose to share his excitement over the "little" things in life.

I love the determination that drives Daulton to excel in her marriage and work and in anything that is thrown her way.

I love that Shelby calls me every day to touch base with me and tell me all about her day.

I love that Tanna will go with me to do my errands and turns my mundane into an adventure.

I love Jaden's wit and humor and I LOVE his laugh.

I love Mark's ability to make me smile or laugh out loud even when I'm in my "funky-est" moments.

Yes, the future holds the unknown. But these things will hold fast until the end of forever. The things I love most will stand the test of time and make themselves visible in my darkest moments.

Beginnings are usually scary, endings are usually sad,  but it's what's in the middle that counts. 

~Hope Floats 

Here's to keep on wobbling toward the middle ground.

Jordan's Landing

It has always been my belief that if we provide our children a safe and sturdy foundation, no matter how much they flit, fly and at times flop around, they will always land on that foundation.

I've seen soaring angels and bore witness to many belly flops as my kids have flown from the cuckoos nest. However, fly as hard and as high as they might, they have always landed safely right back in my arms.

A few weeks ago, I watched a graceful, dynamic landing by a dear friend of mine.

Jordan has been a friend of my boys for many years. In fact, it was so long ago that I don't even remember the how, when or why to their friendship. He was always one of "my" kids. Always has been. Always will be.

Jordan dabbled in alcohol and drugs. Jordan became addicted. He did things that were "out of character" for him. He went in and out of jail. Periodically Jordan would land at our house and I would see the fear mixed with self-loathing in his eyes.

Jordan wanted to do better. Jordan longed for a life complete with happiness, but he could never quite pull it off.

In November, I sat with the Brown family and cheered wildly as Jordan graduated from drug court.

I'm awed at the strength shown by my friend. I know this has been a tiring, difficult journey for Jordan as well as his friends and family.

I know people don't understand addiction. I'm not an addictive personality. Lucky me. I'm surrounded by friends and family that are enslaved by substance and have made a stand to spit in the eyes of their fears.

I'm proud of those that find the strength to overcome addiction. I applaud the friends and family that allow change. Addiction touches everyone in one way or another. Thank you to the addicts that have shown us that belief and love are a stronger force than substance.

So...build foundations. Stand on those foundations with arms wide open so that those that fly in the face of a storm know right where to land.