The End is Another Beginning

I just read my last post, It’s 4 o’clock In The Morning, and sit here stunned.

There are no more sounds coming from his room.

The monitor has been shoved into a drawer and I don’t thoroughly understand why I’m sleeping through the night. Maybe it’s because the tension so many nights that were a small version of Hell. Little did I know that those nights were hard, but would get harder at the end.

My husband, daughter and I cared for him before and after Alive Hospice was summoned on May 4th. A Hospice nurse would check on him daily and take vitals. An aide would come two to three times a week for bathing. He was bedbound a week or so later. He was 44 and a vital cyclist. His heart…his heart wanted to beat. His brain was done. Shutting down.

His end was much like his beginning almost 45 years ago. We cared for him. Bathed him. Kept him comfortable. We loved him. His baby sister sat by his side, held his hand and would not leave him on his last two days in that room.

He’s gone; Into the Heavens and leaving rainbows in the sky without the rain.

Our lives have been filled with love from family and friends. He had a Celebration of Life that showed who he had been. What wonderful art and music and travels he made and enjoyed.

I will miss him, a part of my heart, until he introduces me to his new friends, Jesus and Abraham Lincoln.

‘Bike on!’ my son. You are loved by many. But none love you like your Mom, Dad and Sister. Forever and a day.

 

Terry Christopher Dunham

August 10 1973 – May 20, 2018

 

Thank you to Alive Hospice nurses and Aides who were kind, cried with us, praised our caretaking and brought T.C. a Willy Nelson Last Man Standing Tee Shirt.

Thank you to all the friends, neighbors and strangers who brought meals to us through Meal Train for so many weeks. We’re alive because of y ‘all.

Thank you to our church, Journey Franklin in Brentwood (don’t ask), for standing by us through thick and thin and helping us make Chris’ Celebration of Life so special. Bell’s Two Roses and cake. Absolutely perfect.

Thank you to Richland Health Center and their great Physical Therapists, Marcie and Thomas and Gracie,another Sturgill Simpson fan and our social worker who became friends of Chris and our family. They all visited him at home the week before he passed away.

Thanks too, to childhood friends Adam and Stan and Ted who wrote or visited from Michigan and/or NY.  And ‘new’ Tennessee friends, Peter, Brian and Sam.

Thank you to my cousins, my sister,  sister-in-law, niece and hubs, friends and family from South Carolina, Michigan, Indiana, New York, Arizona and Gramma from Florida who came to help us before and after. I love you so, Sissy.

Thanks, too, to all his Eugene friends and friends around the world who had kind and similar stories to tell about this sweet soul.

We are blessed to be his parents and sister for over four decades of his story.

We miss his joyful and peace-filled spirit.

Adventure awaits, Chris. Ride On!

And tell Abe we said “Hello”.

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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.

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.

 

 

 

 

Teary-Mom Time of Year

I’ve been reading a lot of posts on FaceBook from my friends about kids going off to school. Some are going for the first time, some are returning in the middle of completing steps to graduating from high school and then some are moving on to college which might be hours or days away from home.

My kids are not kids anymore. They are in their forties and I am no longer a young mom, teary -eyed at watching them go through childhood. I am an older and wiser teary-eyed mom watching them go through life’s trials and heartaches. One has a medical disability and the other is looking for a fresh start in a new state.

I wrote these two poems during my younger-mom years. The first was in 1981 when my youngest started Kindergarten.

 The Quiet

The day has come, it’s finally here
They’re gone all day, there’s no one near.
There seems to be one sound I hear,
The quiet; how it hurts my ears.

 

The second poem is when my first-born son went off to college.

First Son

Why didn’t anyone tell me how I’d feel
when I walked into his room to raise the blinds
and faded squares and rectangles glared from the walls
once covered in posters of fast cars and pretty women?

Why didn’t anyone tell me how I’d feel
when I looked into his closet that used to be
packed with jeans and tee shirts and sneakers
and now holds only empty tangled hangers?

Why didn’t anyone tell me how I’d feel
when I answered the phone on the first ring
and it wasn’t one of his buddies calling
and more importantly, it wasn’t him?

Why didn’t anyone tell me how I’d feel
when I realized this was the end of his
childhood, the beginning of his future
and a new beginning for me?

Did anyone tell him how I’d feel?

Children growing older and doing what we’ve raise them to do is heart-wrenching sometimes. It’s a time of growth for kids and for parents. It can be survived, and looking back, the memories are sweet and real.

These tears will become cherished memories.

I promise.