All the Little Things That Define Marriage – Part Two

Back in the day, I was a budding writer. I was part of the inaugural group of the “Colorado Voices” in the Denver Post.

In August of 2001, on our anniversary as a matter of fact, my piece was published.

I’d meant it as a tribute to my husband, and it means even more to me today.

So, if you’ll indulge me, I’d like to share it with you now with an update.

All the Little Things That Define Marriage

A pat on the backside. A quick hug in the hallway.


The Morse codes of romance that you learn after you’ve survived the ritual mating dance.


Once you’ve spent the requisite time waiting for the other shoe to drop and then figuring out that it’s never going to, you settle into a comfort zone with your mate. Sure, the initial wild excitement and the giddy romance are nice, but they can’t hold a candle to the sweet assurance of love that has lasted for years.


Sly winks to each other. Turning up the radio for a special song. An arm slipped around your waist while you’re cooking spaghetti.


These little things are what define a marriage. They’re the merit badges earned after you’ve passed the “now-I-know-all-about-you-but-I-love-you anyway” test.


While my husband battled a neurological nightmare for 18 months, he was with me physically but not “with me” totally. His illness robbed me not only of the strong man I had leaned on for all of our married life, but also of the little things I had somehow taken for granted. I was never alone but, boy, was I lonely. I didn’t have him to chat with. I couldn’t share my fears with him, because he was at war with demons threatening to destroy his central nervous system. Compared to his struggles, my losses were insignificant.


Holding hands in the car at a red light. Curling up in each other’s warmth to go to sleep. Walking into a party hand in hand.


Little things. Until they’re gone. Then they become part of an intricate fabric that you watch unraveling and dissolving at your feet. You can’t even remember what they felt like, because you never paid attention to them when they were there. My heart goes out to every lover who no longer has those little things.


When we were first married, we’d snuggle together in bed at night, talking about our dreams for the future. When his symptoms were at their worst, nights were spent helping him to breathe without choking, waiting for his medicine to get him to sleep and then allowing myself to toss fitfully for a few hours before the sun rose. It was too much of a struggle for him to talk, so our conversations were limited to my posing simple questions that he could nod or shake his head to. I’d stroke his brow and kiss his face, but he had lost the muscle coordination necessary to return the gesture.


A squeeze of your arm. Ear nuzzles and a mumbled “I love you.” Telling really bad jokes. The unique signature denoting two lives that have been forged into one.


While he was confined to bed, the toothpaste tube didn’t get squeezed in the middle, glasses weren’t left on the counter and I had complete and total control of the television remote. I hated every second of it. Trips to the drugstore became 15-minute races before he woke up. The pharmacist and I were on a first-name basis.


Tickle fights. A hand resting on your thigh.


He fought with the heart of a champion for more than a year to get well. Success was measured in little things. Walking unaided down the hall. Sitting up in his chair for an hour. Driving around the block. Three hours without any seizures becoming three good days without symptoms.


Coffee in bed. A foot massage.


We’re just now getting back to the little things. I treasure each kiss and luxuriate in every caress. I’m memorizing each snuggle. We hug longer than we used to. Today is our wedding anniversary. My husband is home and getting stronger every day. I’ve even given him back the remote. Please help us celebrate all of the little things that mean so much more now than before.


Right now, grab your significant other and give him or her a hug. Just because.

And for the update that I’d hoped I would not have to write for many more decades:

My husband has managed to cheat death for 15 years.

Since going into remission from tardive dyskinesia, he’s had shoulder reconstruction surgery from the near fatal accident we somehow miraculously managed to survive five years later; a five-way bypass; a pacemaker.

I suppose the hardest thing for me is that he’s always been the “Energizer Bunny” of husbands. He’s consistently lived through things that other mere mortals shouldn’t live through. I keep praying for a miracle, but everyone (even he) says there are no more to be had.

So, we wait.

This time, there will be no more “Walking unaided down the hall. Sitting up in his chair for an hour. Driving around the block.”

The tickle fights and hand resting on my thigh are memories.

Hell, I can’t even make him spaghetti anymore because of his dietary restrictions.

We’re slipping back into the nightmare of nights spent helping him to breathe without coughing, but there is no medicine to get him to sleep. Allowing myself to toss fitfully for a few hours before the sun rose would be a luxury that I’m afraid to take right now.

He can still talk, but our conversations are now “are you going to miss me when I’m gone?” and “I want you to get on with your life” – although he is my life, and has been for so very long that I’m probably going to wander aimlessly for a bit.

He’s still fighting like a champion – only his goal is to make it to one more anniversary on August 26th. I’ve watched that drive and determination before. I’d almost bet he’ll make it.

I know that all too soon, the toothpaste tube will no longer be squeezed in the middle, there will be no more glasses left on the counter and I will once again have complete and total control of the television remote. And I will hate every second of it.

But now, just as in 2001, and I do mean right now, grab your significant other and give him or her a hug. Just because.

Half update, half cry for help

I’m not sure if this is the “appropriate” forum – but, on the other hand, it’s my blog darn it.

For the many if you who’ve said “let me know if I can help” – this is my official cry for help.
Here’s where we are:
The heart is a wee bit stronger because of dialysis. Output is better. Kidneys still crappy.
However, after an agonizing Saturday with a poopyhead hospitalist with zero bedside manner, and whose stupidity threw hubby into a full blown panic attack – I was able to corner both the cardiologist and nephrologist at the same time. That meeting of the minds resulted in this:
We’re bringing him home with palliative care not hospice (yet). Possibly as early as late today depending on how he does with dialysis. The nephrologist has put in orders for outpatient dialysis. The cardiologist said no more heart meds – it’s holding its own and any meds they’d give him would only further damage the kidneys. He said that he’ll more likely pass from kidney failure than from heart failure.
We’re meeting with the palliative/hospice people this afternoon and I’ll have a better grasp of what they can and can’t do.
He’s conversant, he’s aware, he’s relatively pain-free. He’s just horribly weak. But, he wants to come home. I’m going to move heaven and earth to make that happen.
He is not in denial. He knows he’s terminal and he’s accepted that. I have as well. His new goal is just to pass at home and, if possible, spend one more anniversary with me on the 26th.

That brings up a whole host of new problems.
#1. I have no clue how to transport him from home to the dialysis clinic.
Problem #2: I am pretty sure I’m going to get hit with huge bills from hospital and consulting docs. I have no clue what the co-pays for outpatient dialysis are. He wants to live as comfortably as he can for as long as he can and I’m bound and determined to not let money dictate how long he’s going to live.
Problem #3: He’s been in such not-great health for so long and really all of our “expendable” income has gone to co-pays and prescriptions – oh heck no we don’t have life insurance (or even burial insurance for that matter).
I’m lost. It’s bad enough that I’m losing him, but being put in an untenable position of being forced to lose him sooner is breaking my heart even more.
So – yes, help.
I’m open to suggestions. I’m determined not to run out of options. I just want to honor his wishes and do the right thing.

If anyone wants to hire a slightly snarky (okay, really snarky) redheaded blogger, I’m available.