Hello Stranger ~

It’s been a long time since I’ve visited my blog. My life has changed forever since our son has gotten ill. Hell, all our lives have changed.

He’s kinda really sick. (That other ‘T’ word is still hard to type) Bossman and I are his main caregivers and we are old farts. Not extremely old, but old and farty enough. The Queen of English (aka daughter) is no spring chicken and she’s dis-abilitied, (creative word day!) and helps as much as she can with administering meds, etc…

A nurse comes to the house once or twice a week as well as physical and occupational therapists who each come twice a week. I thought only very rich people had this advantage, along with their own cooks, hairdressers, make-up artists and wardrobe gurus.

Ours is a wonky position to be in as caregivers and I’m looking into doing something about it. I’m in search of a Professional Caregiver. I’m sending out an email to a man God introduced to me yesterday at Richland Place where our son stayed for a month during his rehabilitation from multiple seizures. He also lost his Kindle there which is why I was there yesterday – to pick it up.

Gracie, our wonderful social worker at Richland tracked the Kindle down weeks ago, but yesterday was the first time we were able to stop and get it. The Queen of English and I had been in the area at Vanderbilt for her first test in a study she’s involved in.  We stopped at Richland on the way home where I made the rounds in the Social Services area where I caught the girls up on our son’s condition and grabbed the Kindle. They gathered pamphlets together when we talked about having a caregiver come in for respite for Bossman and me. “Where’s Davis’ business card? I have his pamphlet… Don’t tell me I’m out of them. Oh! I have one left!” That was Gracie talkin’ there. Then she and I walked down to the PT rooms and said hello to the people that took care of our guy. They were excited to see me and looked for Chris. I explained he’d not been doing well and they were sad. I promised to bring our son up to visit them on a ‘good day’.

Gracie and I left the PT room when she stopped dead in her tracks. (possibly a bad term to use regarding a rehabilitation facility, but what-the-hell) “That’s Davis right in front of us!” She greeted Davis and we explained our need. He explained that his company had just added our area to their care map and he was the person overseeing that area.

He’s getting an email right after I finish this blog.

Thanks God.

 

UPDATE: 04/12/18     Davis came to our home and our respite care will start on Saturday and continue for all playoff hockey games and any other time we are in need. We are all confidant in this man and the company he works for. Thanks again God.

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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.

 

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

 

Every Evening Wonders

A few hours ago, I walked out my backdoor into the day’s twilight and my focus instantly shot up into the dusky sky and stuck on the glittering  red planet directly in front of me.  I was filled with awe at Mars and its backdrop of a fading blue sky, with cotton-candy-spun dirty white clouds. My eyes shifted to the right where a brilliant white star  or possibly, Saturn, stole my attention. Shifting back and forth between the only two lights in the sky, I was filled with innocent wonder as the fireflies, far beneath them, flitted through the trees, mimicking the two brilliant lights and begging for my attention.

How clever for our Creator to mimic His stars, planets and tiny little flying bugs. From the astounding mammoth creation of the Universe to the tiny, short termed lifespan of our fireflies.

I am awed and child-like.

mars-fireflies-5-29-2016-Matt-Pollock-upstate-NY-e1464643394703

Photo by Matt Poll, upstate New York, May 29, 2016