Let Them Eat Cake

Four hundred and forty-eight days ago I lost my 44 year old son to a quick and life-altering brain disease. But, it wasn’t just me losing a beloved child. My husband also lost a son and our daughter lost her best buddy in the world; her brother.  

Many people have been affected by his death. Many people have held us close to their hearts, literally and I hope his extended family as well as his Oregon family have gathered together and talked about him.

Especially today – his birthday.

He would have turned 46 which is very hard to believe, since I’m only 50. (not)

Gretchen, Terry and I wanted to honor him in a special way. A way that would make him smile that big crinkly smile of his and have his big ol’ eyes sparkle.  So, that’s what we did. 

I’d read about a woman, about a year ago, who recognized her late son in a very special way on his birthday. She went to the bakery in her local grocery store and asked if they had any little boy birthday cakes that would be picked up that day. Then she would pay for the cake and be an anonymous gifter.

Terry, Gretchen and I talked about doing that this year. So today, after a meeting at church, Ter and I stopped at Publix and sat in the car while we haggled out what we’d say to the clerk. “We’d like to anonymously pay for a little boys birthday cake.” We wondered how that would be taken and if there’d be a crowd on a Saturday. We decided we’d wing it and headed inside.

On the way back to the bakery, we tried to decide which one of us would do the talking. As we got closer, we noticed a guy leaning over the bakery case and Ter hurried to became the next in line by inches. I sidled up between him and the guy leaning over the case. 

“Yes! It’s a Car Cake,” the guy said to the lady holding a large cake box behind the case.

I nudged Terry. “It’s him,” I whispered loudly. 

“Excuse me,” Ter said. “Is that for your son?”

“Yes, it is. He’s three today.” His smile said it all.

“Would you please let us buy that cake for you?”

He politely refused until we told him our story. He relented, told us he had to pick up a few other things, including balloons at the front of the store. Terry ripped the bar-code off the cake and took it to the front of the store and paid for it. The dad and his mother met us at the balloons.

“I’m the Grandma!” she said as she moved between Ter and me and pulled us into a group hug.

The dad said, “I can’t wait to get home and tell my wife this story.” His smile said even more.

We couldn’t wait to get home and tell Gretchen the story.

Happy Birthday, Boys!

 

 

Gratitude and Crap

[This post has been edited on 04/10/19]

This is a season of gratitude and crap.

Gratitude because our hockey team, the Nashville Predators just won the Division Championship.

Crap because our hockey team, blah-blah-blah, just won the Division Championship and now we’re in the playoffs.

Gratitude because we’re in the playoffs.

Crap because we’re in the playoffs which reminds me of our son going to playoff games with us in 2017 and celebrating his favorite player, Victor Arviddson. Chris had also started acting odd. Odd like getting lost, leaving games early, not showing up on time to go to games and other abnormal behaviors like losing jobs.

The playoff year of 2018 was worse. In January Chris was diagnosed with a very rare brain disease:  adult onset leukodystophy with axonal spheroids and pigmented glia.

Gratitude for 911, EMS, ER’s, PhD’s, MD’s, RN’s, LPN’s, PT’s, Family, Friends, Neighbors, Strangers and God’s presence entwined in our Hell.

Crap because they were all needed.

Gratitude for the diversion in the spring of 2018 when the Predators got into the playoffs again. Chris stayed home with Gretchen and the home caregiver that would come while we were at the games. He needed help eating and walking, but he sat and watched the Predators with his sister and his caregiver – falling asleep many times in the recliner.

I’m coming to the conclusion that everything in our personal lives, focuses on our children. No matter how old they get, they’re still our children. I’d gotten to the age where I would joke that our kids, Chris and Gretchen, were now older than me. Terry has always been an old soul. Me, not so much, although I feel like my soul has aged decades in less than a year.

Gratitude for our daughter who was such a hero to him and to us. She is very devoted to her brother and they loved each other dearly. My heart will never heal from their sorrows.

Crap because I’m writing about loss again. It’s almost a year since our son Chris died. Time flies, and then again, it stands still.

Gratitude.  I got words down.

Crap. I  got words down.

Go Preds~

 

Gratitude

A neighbor gifted me a book on grief. It’s been a Godsend.

 

 

 

 

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”.

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

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.

 

 

 

 

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

Hangin’ in the Paris Metro.

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.

Overwelming to Overwhelmed

 

o-ver-whelm-ing adj. 1. So great as to render resistance or opposition useless; overpowering.

o-ver-whelm v.t. 1. to overpower in mind or feeling; overwhelmed by remorse. 2. to overpower with superior force or numbers. 3. to cover or bury beneath a mass of something. 4. to burden excessively.

 

 

Where do I start? I like to think that I roll with the punches when challenged with hurdles thrown in front of me. I think I handle them pretty well when they’re my hurdles.

In January, I had a medical problem that my regular doctor couldn’t quite fit into a category. After having a physical exam and a CAT scan that showed no abnormalities he diagnosed a pulled groin muscle and told me to rest, don’t lift, apply heat and take ibuprofen. (I rarely do anything strenuous enough to pull a groin muscle. Honestly.) Three months went by and I still had terrible pain in my lower abdomen and both groin areas. So, I went to see a young woman from church who is a doctor of kinesiology and chiropractic. She helped me with, what I called her ‘voodoo’, aromatherapy, and weird and wonderfully painful pressure-point torture procedures. Today, I am pain-free and I thank God for her. Hurdle cleared.

A large basal cell carcinoma on my nose was my hurdle in February. My left nostril was rebuilt by my surgeon, Dr. William Stebbins at Vanderbilt Dermatology. I had eleven shots in my nose, was at the surgery center for six hours, had three biopsies and a partridge in a pear tree. It was overwhelming for a day or so when I’d see the quilting job he did on my nose, but I moved on. Those stitches were a hurdle I had to reckon with, and I did it. I reckoned that the surgery probably saved my nose and maybe my life. Hurdle cleared!

On March 23rd I had my two upper wisdom teeth out at the age of 63. They weren’t doing me any good, wisdom was fleeting and they were harassing the teeth in front of them, so I figured, “What the Hell. Get rid of them!” Dentists had been after me for at least three decades to get them out, so I finally gave in. It was a no brainer and I recovered quickly and completely. Hurdle cleared!

April was a reprieve for me, but Bossman had basal cell cancer surgery on his neck. He’s joined the Skin Cancer Survivor Club with The Queen of English (our daughter who has a Masters degree in creative writing), and me.

May was my birthday month, so Bossman gifted me his cold that had staked a claim in his chest producing a barking cough. My present just made me feel lousy. We missed church for the first time in forever. Then all Hell broke loose.

On Wednesday, the 18th of May, I woke up, rolled over to look at the time and couldn’t open my eyes. Damn that Sandman. I felt my way to the bathroom, turned on the faucet and prayed I didn’t have pinkeye. The soaked heavy warmth of the washcloth felt good on my now scratchy eyes. One was pink. Thinking I could catch it early, I treated each eye as an individual. Each one had its own fresh washcloth for its warm water compress and individual towel. I researched which Essential Oils I could use and placed them in odd reflex spots on my toes to help my eyes. (I don’t get it either) I was going to tough this out. Hell, I was turning 64 in less than a week and this childish pinkeye hurdle was not going to get the best of me.

So, later that evening it was close to 10:30 when the ER doctor, Dr. Handsome, ordered a shot of antibiotics in my hip, put antibiotic drops in my eyes and handed me two scripts for drops and 1,000-milligram capsules for a week by mouth. My painful eyes, almost swollen shut, and the disgusting goop being manufactured at a pace that would rival China’s iPad production were a challenge for the medical staff to contain their “Oh, that’s really gross” face. Zombie PinkEye. I looked as if I did a few rounds with Mohammad Ali and lost. But, I was much better by my birthday on the 24th. Bossman and my semi-pink eyes and I went to lunch and picked up Gigi’s Gluten Free Cupcakes to share with the Queen of English. Then I took a nap. Hurdle cleared!

Little did I know that those hurdles were nothing compared to what lay ahead for our adult kid.

Our medically disabled daughter was diagnosed with POTS [postural orthostatic tachycardia syndrome] a few years ago and falls down frequently because of low blood pressure. That’s a twenty-seven foot tall hurdle in itself. She has also been suffering from vertigo over the last few months – a double-whammy if I’ve ever seen one. With her POTS falls, she’ll yell, “I’m fine!” when she goes down like a pile of bricks and we’ll continue to watch TV or eat our dinner as we reply with a mouthful of mashed potatoes, “Okay. Thanks.” If we don’t hear the “I’m fine”, we yell, “You okay?” and she might eke out a weak “yes” and one of us will run or hobble up the stairs anyway. Hurdles everywhere.

During all my temporary medical drama this past year, we’d hear her POTSie falls, later mixed in with the Vertigo crashes, coming from the second floor where she lives. SuperDad/Bossman/ManNurse would fly up the stairs to check on her. I’d cover my head with my soft blanket and pray.

We need a better system.

Lately, her vertigo has become violent. Tests start on Monday with an MRI of her brain and we’ll go from there. Her saving grace has been the nurturing and photographing of our abundant, civil war battlefield/ backyard birds, ducks, turkeys, and squirrels. As she pushes her walker to the back door to feed the yard birds, all too often it looks like some ghost of a Yankee or Rebel soldier is pushing her sideways or backward. She’ll slam onto the hardwood floor, and while I move to help her I yell, “You bastards!!! Leave her alone!!! Sons of Bitches!!!” It feels good to be able to blame someone for this stuff.

Vertigo is an evil hurdle to tackle. The attacks come as if they are set up on her old high school track where she ran miles and miles for years. One after another after another… When an episode happens, it’s as if she’s being slapped on the forehead. Her head jerks back, she loses her balance and down she goes. Again. She recalls her college days occasionally while she’s on her knees hanging over her fuchsia walker. “I used to enjoy feeling this way once in a while.”

It’s overwhelming.

I am useless. I freak out. In my rush to get to her, I might trip and fall on the bed or bang up against the wall. She smiles and shakes her head. When she has an attack in front of me, I automatically turn into Kramer from Seinfeld. That makes her laugh. I try to help her get up and either tickle her by mistake or grab her somewhere inappropriate. We laugh again. “Just helping…” I mutter.

The Queen of English says we’re a sitcom.

We are.

I’d call it, Overwhelmed.

Three Summer ‘R’s’

 

These summer months in Tennessee have brought family and friends to our home as they traveled from one place to another. South Carolina to Colorado. Texas to Vermont. Florida to Mississippi to Ohio to New York. Michigan to Ohio to Tennessee to Michigan. We’re in the perfect position to nab them as they travel on I-65 and share a evening or two of fleeting quality time.

 

Though, some stay longer.

 

This morning I was up at 4:45 baking brownies for our friends to enjoy on their trip back to Michigan. They’ve been here for ten days spending time with our disabled daughter while we were away, and when we returned, with us as a family. Food, games, laughs, long talks and an ER visit that was thrown in for good measure, were shared. The ER visit proved to be a God-send. Discovery that our daughter’s three pulmonary embolisms had disappeared with the treatment of Xeralto over the last three months. Thank you, God and physicians!

 

Bossman and I missed the field trip to the ER. We were in D.C. attending the stunning and somber ceremony in Arlington Cemetery of the funeral for Bossman’s brother, Major G. R. Dunham. His widow, daughters, son-in-law, aunt, cousins, mother-in-law, Bossman and I all stayed together in two enormous suites in a Wyndham timeshare at National Harbor. Treasured family bonding was experienced by all.

 

After our Michigan friends headed out this morning at 6:30 and Bossman left to play golf, I felt the need to visit my past.

 

I grew up in the ’50’s in a small village in upstate New York. All my relations lived within walking distance. Hot summer days were greeted with the women getting out the hose and washing down the front porch or stoop and the sidewalk. I remember my Nanny Donovan, neighbor ladies and Mom with the green hose, and pointy nozzle hosing down the dust, dirt, bugs and grass clippings from the porches and sidewalks.

 

So, I did that this morning. Pulling the hose up the steps I shot water at the cobwebs, the wasps, the grass clippings and the dirt. Brick and cement turned dark as the water washed over them and the old dirt and cobwebs dripped over the porch and ran down into the mulch that drank it all up. Blades of mowed grass, nudged out of corners of steps, washed away into the street.

 

The fragrance of wet brick, water, humidity and grass were a natural cologne in this morning’s summer heat. A prescription for calm.

 

Relief. Reflection. Relaxed.