Mother’s Day 2019

Santas workshop me two kids                                          Around 1977-78

 

My first born made me a Mother.

My second born made me a Mom.

This will be my first Mother’s Day without my firstborn.

My second born is feeling his absence as much as I am. So is his Dad.

To all the Mothers, and others who’ve taken a mother’s place,

and have lived through the loss of a child…

It’s sad.

It’s weird.

It’s uncomfortable.

It’s debilitating.

It’s soul-sucking,

heart-wrenching,

and it’s out-of-order.

I don’t know what to expect. I will try to focus on who I have more than who I’ve lost.

{I know he’s sad, too}

My first born made me a Mother.

My second born has me as a Mom.

 

In loving memory of Terry Christopher Dunham, August 10, 1973 – May 20, 2018

With admiration and love to Gretchen Sue Dunham aka Baby Girl, February 16, 1976 –        infinity and beyond

 

Love always, Mommy

Long Time, No Words

Last night my wonderful friends in CAPS, our writing group, reminded me of how long it’s been since I’ve worked on my book. Over two years.

“Start in again with your creative nonfiction. That’s so easy for you and you’re so good at it. Write a blog.”

“We’ll see,” I replied.  “I just don’t have any words.”

So a little bit ago, after checking my email and surfing the seas of Facebook where I checked into local events that I was “Interested” in, knowing I’d never go, I decided not to follow the rabbit trail to Tri-Peaks Solitaire or Hit It Rich Casino games like I usually do. I thought, “Let’s be a brave grown-up and check into WordPress to see if we can get any words down.”

I had to look up my username and password. I discovered my last post was June of 2018 the month after my son, our son and our daughter’s brother died. My heart broke all over again. I read the last two posts, tormenting my soul, my heart, my memories. The nightmares. The exhaustion. The fear. The hopelessness of never seeing his smile, hearing his voice, or enjoying the kitchen with him. Loving his ‘ways’. Getting his amazing hugs.

That’s all gone.

I look for signs. Lights flickering. Dimes. Pennies. Anything.

All I get are tears.

So here I am, tears streaming down my face wondering what you want to read. Maybe you want to know how we’re doing. I’ll share. The holidays sucked. Truth. No sugarcoating it. Not entirely but we couldn’t wait for them to be over. They were the hardest ever. Also, I’m on medication since summer for depression. Or maybe it was fall. Who knows?

In June it took me three days to make one pie. (It was inedible except for sweet Jack who ate his piece)

I couldn’t complete —– a sentence.

I went into his room a lot and cried. Smelled the clothes in his closet, sat in the easy chair and stared out the window, looked at the ceiling knowing this was the place he left this world of ours on May 20th, as Terry and Gretchen, who held onto his hand, sat by his hospital bed. I walked in just after his last breath.

Going into his room always ended with me falling apart and breaking off more of my heart. So the three of us discussed painting the room. New paint like the main house. It helped. A lot. It’s a peaceful spot now and instead of Niagara Falls, a tear or two will drop from my chin. Or maybe three or four. We also painted and redecorated the bathroom Chris used.  Terry was his caregiver when it came to the bathroom. It’s still hard for him to enter that room. (I wanted to find a shower curtain that would honor both our kids. Chris’ devotion was for the elephants and Gretchen’s is for birds. I found a shower curtain with both of these creatures on it and included it at the end of this entry)

Terry and Gretchen and I cry. We also laugh and talk to him all the time. Chris is throughout the house. Pictures, statues, and cremains… Yup. He’s also down the street in the Williamson Memorial Cemetery, and in the Pacific Ocean and on the beach where he flew kites. The top of MacKenzie Pass in Oregon has him on the roots of a young pine growing in a lava field. Scott Lake on top of that mountain where he biked and picnicked with friends has him scattered on the shore and in the lake. He’s also in pockets, on top of dressers and who knows where else. Glass stones with his cremains were gifted to us and we’ve passed some out to his friends and our family. A tree is planted with his cremains in our backyard. He’s everywhere. Truly.

Gretchen’s emotional release has been to shop online. CRY – DON’T BUY was our motto for her. She’s finally crying and has been wearing Chris’s clothes and hats. I love that.

Terry and I release tears together a lot. We hug a lot. Ter played golf this summer/fall and that helped him. His golfing buddies have been an amazing support system for him as have our friends from church and our writer’s groups.

We did do Gingerbread Houses with our grandkids this year. I’ve done them with our kids for decades and then the grandkids joined in. Chris always won the best gingerbread house contest. Until last year when he just couldn’t figure out what to do with the graham crackers and royal icing. Gretchen wasn’t up to it this year, but she agreed to be the judge of the best house. It was nice.

So… This is all I’ve got for now, which is a hellava lot more than I’ve had for the last six months.

Life. It does go on. As hard as that is sometimes, it’s important to get back into the game of living. One day at a time. Knowing people love and care for us makes it easier. We’ve been blessed with loving family and framily. Still.

Peace and joyous days to you and yours.

Thanks for the love.

20180915_184849

 

It’s 4 o’clock in the morning…

I woke at 4am, after a few fake-awakes during the night, with some real prickling cramps in my toes. The baby monitor laid facedown next to my pillow, the sound turned off. There have been too many nights listening. Coughing. Choking. I’d run in, check my son, adjust his head, consider suction or not-to-suction, wet his lips, give him water. I’d sit in the oversized chair and hold his hand,  stand and stroke his forehead, eyebrows, cheeks, run my fingers through his hair and whisper mother love-words to him.

Not this morning.

My son is 44 and dying from a rare brain disease.

This morning, I didn’t go in after I slowly turned the monitor over and saw him sleeping. I couldn’t turn the sound on. I wouldn’t turn the sound on — in case there wasn’t any.

My robe was hanging on the post at the foot of the bed, taunting me to sit up, put my bare feet on the floor, put that lime green summer robe on and go to the fridge to get a Gatorade for the cramps teasing my toes and thigh.

Fine. I’ll go.

Robe on. Feet slapping hardwood to the damn cold Gatorade. Grab stale oatmeal cookies from the pantry and leave the kitchen for my office. I stop to listen. I hear him snoring softly.

Do. Not. Disturb.

I don’t.

 

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.

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