Who the Hell is on First?

And does it really matter? What if Who is on first? If Who’s on first, Who could be on second? Who’s to say Two can’t be named Who? What Two? Those Two Who’s is Who or are Who. Ah…what the Who!

Yes, I’m losing my mind.

All I’d like in life is to have one password for everything I use a password for, for the rest of my life. One username. One password. That’s all I want. That, and a puppy. Or maybe a fish. You can’t cuddle a fish, though. Maybe a pillow. You can cuddle a pillow but it won’t wag it’s tail or lick your face after it licks it’s pee-pee.

See? I told you I was losing my mind.

I was trying to get into my CaringBridge site earlier today to update people on our son’s doctor’s appointment. It wouldn’t let me.

Some backstory: I had to change my password for FB which had me locked out of my page for about two weeks. Long story short, my daughter, The Queen of English, posted on my FB site something about ‘Russians being able to post false ads and getting away with that but my Mom can’t get onto her FB page’. Magically, a day later I was allowed back on FB. With a new password. I swear, (and those that know me, know that’s true), I changed my password for that site at least twenty times. I had no idea what I ended up with, which CaringBridge really cared about. I could get into Son’s page, but couldn’t post. I tried to talk to someone live, was first in line to have a Live Chat, and after 15 minutes of wait time, I had to leave and hang wash, do wash, sweep floors, clean bathrooms, straighten the Man/Boy’s room out a little bit, do dishes…etc…  When I finally got back to my computer I saw that the Live Chatter had posted after I’d left and then the opportunity had passed because they closed at 5pm.

Here’s an update on our son’s stuff:

We saw the specialist at Vanderbilt, who did a cognitive test, confirmed there were some issues, (I would have failed the first test, which I was a tiny bit concerned about. Count backwards from 100 by 7’s. Fail for me and the man-boy. Bossman:  Psst…that’s easy.  Me:  Nobody likes a engineer showoff – unless you need something fixed.

The doctor was kind, totally focused on our son, asked lots of questions which raised all four of our eyebrows with some of Son’s answers. We were able to talk to the doctor about some of his answers which were very creative. Then we were educated on the MRI and the condition of his brain. More than we’d expected because the interior cortex is also damaged. There will be a brain biopsy in the future after we contact Vandy Financial Aid.  The biopsy is needed to be able to diagnose the type of Leukodystrophy we’re dealing with and then we’ll go from there. The good thing about having the biopsy is that the damage is on the very top of the brain, so they won’t have to go in very far at all. That made us feel much better.

It’s been a sometimes exhausting life since the seizure, but we’re just grateful that he’s home with us, has wonderful men in his life that he’s met at our church, and puts up with us busting his bubbles once in a while.  Travel is out for now. He shouldn’t travel alone if he does travel. He can’t drive or ride his bike. It stinks, but it’s the safest life for him and others on the roads.

Thanks for listening. I hope I’ve covered everything since the Big Appointment and when I figure out CaringBridge and my password craziness, you’ll be updated that way again.

Now, where’s my wine? It’s way past 5 o’clock.

 

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Musical Tears

dancing at wedding
March 31, 2017 – Before It All – Zoe and Jordan’s wedding.

Susie Notes:  Our 44 year old son has been diagnosed with Leukodystrophy, and is in ‘an altered mind state”.  Read: dementia

 

Since all this has happened we’ve tried to find little ways to make us happy.

We’ve been married over 46 years and have enjoyed music that has eventually played out the story of our life together.

Our Bose stereo system was over 20 years old.  After being ‘fixed’ ten years ago, it’s been disabled for a long time, holding cd’s hostage for too many years. Bossman hooked it up to another CD player for a while but I had to use three remotes to run the working  CD player that was on the bottom shelf, a quarter of an inch from the floor. I wear progressive bifocals. Fagedaboudit. I strained my neck trying to figure out what stupid button did what.

A few days ago, I wandered into the living room, stood in front of  the cd player with all my music in it and started to cry.

Bossman said, “What’s the matter?”

I sat on the edge of the coffee table, looking at that blurry old cd player and said, “All I want is my music.” I sobbed and he held me.

Monday he went to one of the Big Box stores, Sam’s or Costco, priced out equipment and came home to share what was on sale.

“Go get it. We need it.”

He went to the bank with his safe deposit key, and took out money from his dad’s estate sale that he’d been saving for the last eight years. (this is very odd, since Bossman will research something until it’s out-of-date) He brought home a new speaker bar and had it set up before dinner was ready.

For the first time, in a long time, we danced with tears in the living room to our music.

 

 

 

 

How Time Flies

Part One

I hardly know where to start.

I browsed through my drafts before writing this blog and discovered 13 drafts of posts I never finished. It was like reading an unfinished journal that contained entries about Red Cross, metabolism tests, and a rant on left-turn green lights. Life was so much easier then.  Although, I think I’ll revisit that left-turn green light idea someday soon.

Part Two

Learning to live a life you never planned.

I believe this is where we sit most days. Learning to accept and devote life to not only God but to our medically disabled adult children. Yes, children. Our daughter’s been ill since 2008 but only officially disabled since 2016. Our son had to ‘one-up’ her (her words) on July 10th when he had a horrible seizure. (No details will follow as it makes me ill) He’s been diagnosed with Leukodystrophy and is in an “fatal altered mind state” – aka dementia. She’s 41 and he just turned 44. They both live with us, thank God. We don’t have to worry from afar, we can worry up-close-and-personal.

There have been days where we’ll watch our son wrestle with getting a shirt on, walking through the house in his BVD’s pacing from front to back, back to front. I let him try to figure it out and when the time is right I’ll offer help. He always says “Thanks, Mom.” I have learned to let him struggle for a little bit, then offer assistance. It’s better that way. It’s interesting as I watch him being attacked by a tee shirt, an arm in a sleeve working like a noose or the roaster chicken getting tied up for the oven – the wing all wack-a-doo. His pacing will end about six feet from me, his war with the tee-shirt over. He gave it his best shot. Pride bruised but still intact.

Finding humor in the everyday is a diffuser for me. I’ve accepted the life of not knowing what comes next. I don’t always like it, but I’ve accepted it and make the best of it. It is so out of my hands.

Part Three

I also have a love/hate relationship with FB at this time. I’m happy so many people have had great family vacations, but a tiny part of me – okay, maybe a not-so-tiny part of me, is a bit envious and sad. I had hoped my kids would be joining us on vacations with their families during this time of retirement. We all got socked on that one.

Part Four

This blog has not been written to gain any type of sympathy. nah-uh.  I just wanted to share what some people around you might be experiencing without you even knowing it. We’re blessed with wonderful family, friends and neighbors that know our story. Look around you and learn other people’s stories. You might be the blessing they’ve been waiting for.

 

Thanks for reading me.

Susie

 

 

 

Little Lost Sleep

I don’t usually dream. If I do dream, I usually don’t remember that dream unless I dream about Thurmon Munson, a Yankee ballplayer who died almost 40 years ago. That dream I remembered and blogged about it. Weird – I know.

Two nights ago I was awakened by a new dream and I woke up early this morning replaying it in my muddled brain and decided to blog about it. It worked for Thurmon Munson -never dreamed about him again.

A dear friend died on January 31st, just weeks ago. I wake up thinking of him every night. I picture him as a kid living in the stories he wrote about his childhood in Dallas, his storied life in the Vietnam War and with us, his writer friends. I don’t want to forget him. I don’t want him to be dead. I don’t want anyone to be dead.

The dream that woke me two nights ago was about Bossman. He died in my dream. I guess I should call it a nightmare, because it scared the crap outta me. He was lying in bed looking pretty rough and as he was ‘leaving’ his face became young and fresh and happy. He looked at me with a beautiful smile of peace. Then I woke up.

I can’t shake it.

There’s a bit of an upside of this. It’s put some of our crazy life into perspective for me. I shared the dream with him and he was touched, and a little freaked out. If you lived here, you’d be freaked out, too. Lately our family puts the fun in dysfunctional.

Later this morning, he and I will go to church and get recalibrated. We recalibrate with God from home, but doing it with church seems to make it stick.

Dreams. They aren’t all filled with rainbow farting unicorns.  unicorn

 

Catching-Up is Hard to Do

Happy New Year!

It’s New Year’s Eve and our house is full of modest activity. Bossman is cleaning off his desk, The Queen of English is probably watching a Hallmark movie or is at her desk editing bird pictures from today’s sit-outside. The Man-Boy is in his bedroom meditating after trying to figure out all the problems with this blog over the last few days. I’m sitting here, drinking a Pumpkin Spice Latte with Wild Turkey. Don’t judge.

A lot has happened this past year. Good and Bad, of course. The Queen of English has been afflicted with Meniere’s Syndrome for almost a year. It’s horrid. Her POTS, postural orthostatic, tachycardia sydrome has been pretty steady at being just ‘bad’. The good news is that she’s finished her novel and has gone through three edits. I’ll keep you all posted when it goes off to agents. Her birding has also been pretty steady. 99% of her sightings are from the backyard and she’s ranked 6th in the county for species sightings for the year.

The Man-Boy, 43, has moved from Oregon to our spare bedroom. He’s job searching and ready to start over in the south where the weather is warmer and brighter. He’s a helper to all of us and has lifted his sister’s spirits quietly by just sitting and watching Hallmark movies with her during the holidays.

Bossman has played golf two to three times a week in good weather and enjoys poker night with the neighborhood guys once a month. He keeps busy with tons of bookkeeping and paperwork, shuttling The Queen to therapy and appointments, finishing handyman work around our house and anyone else’s who needs it.

Our ‘chosen’ grandkids are the lights of our lives. Kate is almost 17 and Cannon will be five on our birthday. Such fun with these two!

Last year started out with a bang for me. I had basal cell surgery on my nose in February which took six hours because the wonderful, amazing Doctor  William G. Stebbins rebuilt my nostril. I love showing it off. I stick my nose up in the air at a lot of people. In March I had two wisdom teeth removed. The only outcome of that was the tattoo I decided to get of Bernie Sanders. (get it?)

I’ve been active in my three writer’s groups, one which Bossman has now joined, and another with just chicks. I also am a leader in our church’s Poets and Writers group.

I attended two family weddings and four graduations in Mississippi, New York and Atlanta. I traveled to EUROPE!!! It was a dream-trip~ France, Switzerland and Italy. Words fail me. I went with 14 others from the Journey Church Arts Collective and we had an experience of a lifetime. The bonding was unexpected and is still so very strong months later.

Last February I was approached by my friend and Creative Pastor, Brett Mabury. He asked if I thought I could write lyrics. “Sure! I think I could do that.” Meanwhile a little voice was yapping at me, “What? What? You? Write lyrics??? hahahaha”.  Well, those lyrics were for a song that was hopefully going to be included in a movie; which opened this December, and had music from Journey Church people, including my song. I took all my friends and family to the red carpet premieres in Franklin and Nashville. I had to join a union. I met the actors in the movie, Believe, and we have three songs, including mine, that are three of 91 songs submitted for nomination for an Academy Award for best original song in a motion picture. We will find out January 24th if we’re nominated. One song, by Rachael Taylor is Number One on the Christian Music Charts right now. She sings my song, Mother’s Theme (I didn’t name it that), in the movie and on iTunes. The DVD should be coming out in January of 2017.

The trip to Europe and the song have been highlights of this past year. What a blessing to have these happen late in life. I’ll turn, cough-cough, the magic age of Social Security benefits in May. It’s never too late to have some exciting firsts. God has plans for us that we never see coming, sometimes.

Florence, Italy
Florence, Italy

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Hangin' in the Paris Metro.
Hangin’ in the Paris Metro.

Discomfort Zone Warning (originally written on August 31, 2016)

Editorial Notes:

Today is December 18, 2016. The post below was written just about 5 weeks before I left for Europe, which was totally amazing and unforgettable. Life has been busy and I will try to catch you all up on it in the next few days/weeks/hopefully not months.    Susie.

 

 

I’ve just realized I leave for Europe in 35 days.

I just stopped breathing for a minute.

Over the last few months Plexus Slim and P.T.  has helped me lose almost 16 pounds.

I’ve been going to physical therapy for four weeks to strengthen my bad arthritic hip, which is now working much better since the tune-up has started. My therapist has added exercises each time I go. It takes me about an hour to do them. We’re working on strengthening my earlobes now.

My travel wardrobe is something I’ve been focused on. Our group of twelve from Journey Church Arts Collective will be welcomed by artists at a Paris Gallery on the first night we’re there.  I’ve done enough work on this old body, that skinny jeans are now in my wardrobe. I am far from being skinny, but these are very slimming and got two thumbs up from the discernible daughter. Finally. It only took me 40 years to pass a fashion test.

I’ve collected numerous Pins, from Pinterest,  that will help me pack light as well as dress comfortably, but not in PJ’s, on an overnight flight to Paris. Ha. There it is again. Paris. {{{sigh}}} And have I told you I was going to Lausanne Switzerland and Florence, too? {{{sigh}}} Overwhelmed in a good way.

We’re looking at small laptops so I can write and post while away. After using a computer to get my thoughts down, using a pen and paper is like getting out the horse and buggy to go into town.

The excitement among my fellow travelers is growing. People are still raising funds to help offset the trip. If you’d like to help someone financially I’m going to post a link at the end of this blog. Prices for the trip have risen, people have had circumstances happen and are in need of help for this Arts Mission Trip. Life is short. Opportunities are sometimes few. Generosity is alive and well. Personally, I’ve been humbled beyond words and to tears by the generosity of family and friends.

Spread the love if you can to an artist with the mission to learn, explore, disciple, befriend and eat pastries. Well, you all know I’m all about the truth.

Thanks for reading me!

Susie