It's OK- We Didn't Need Any Sleep Tonight

We had a little scare night before last.

Alec woke up in the middle of the night crying, which is very unusual.

He's a stoic boy, not given to being sick and being very brave when hurt.

It was abdominal pain, so severe he couldn't even turn over or sit up or walk.

No fever, no vomiting, no ("MOM- don't say it"), just blinding awful pain.

We tried some Tylenol, then some GasX, and manually shifted him around to see if any other position was better than another. Since the boy opts to sleep on his loveseat, which is about half his body length, we asked if he wouldn't be more comfortable on our bed, but he couldn't get up.

*disclaimer- he HAS a bed- he has THREE mattresses- all of them currently used for piling STUFF on.

Without thinking, Ward picked up his 85 pound son and carried him to the bed. Across the house.

We got him a little more comfortable in the bed, but he was still in awful pain.

In between tears (not like him), informing us he'd never been in so much pain EVER and imploring me to do something to MAKE IT STOP, he started asking to go to the emergency room.

I called the nurse at telecare and she talked to him. When I got back on the phone she said "He's very sincere- it sounds like he's in a lot of pain- even though it's not specifically on his right side, we can't discount appendicitis and I recommend you go to the emergency room NOW".

Ward and I dressed to go and I texted Joe to let him know where we were going, why, and that I'd call him when we knew anything.

I brought clothes into our room for Alec to get dressed in and he said

"Hey. It's gone. The pain is gone. Now I'm really tired."

And he got up, walked back to his room and went to bed.

Ward and I looked at each other. I texted Joe. We got into our jammies and went back to bed.

Ward stared at the ceiling. "I'm too old for this shit".

I've known that ever since Alec was born. The midwife handed me the little person I'd grown inside of me and instead of 8 pounds 4 ounces he seemed to weigh a million pounds and I knew that this one was different. Different from the other two.

Not that he's more special- because he's not.

But that *I'M* different. I'm older. I know the truth.

The truth that slices my heart into shreds when he's sick or hurt.

Because when you're young and you have babies they get sick or hurt and you think "Bummer- poor baby" and you take care of them till they get better.

When you're old your brain flashes every news story about every child who's ever died from the exact same thing yours is currently suffering from.

Over and over and over again until they're better.

So Alec's better. And we're all better.

Every day is a gift. Every moment spent with the ones we love is a blessing.

Life is fragile.

Handle with care.

"You Used to Be So Normal"

I have a confession.

I voted Republican pretty much exclusively till about ten years ago.

My family was working class middle class Lutheran class Midwesterners settled into a mid-sized town squished between Milwaukee and Chicago and perched precariously on the shores of Lake Michigan.

So here's what I was taught-

-Work hard and you'll be rewarded. At least well enough to keep your family fed and clothed and housed. Which is all you should expect- just that is enough to say daily prayers of thanksgiving for and anything more is frankly a burden most people can't handle.

-Pray sincerely and you'll be rewarded. There's a special place in Heaven for good people who attend church, tithe without fudging and kick a little something into the (socially approved) charity of your choice for extra bonus Angel Points.

-Listen to your teachers and get good grades in school, for therein lies the path to success, to contentment, to a life every bit as good as your parents' and grandparents' lives. A 9-2-5 taxable employment, a mortgage, a marriage, 2.5 perfect children.

Anyone not following the above rules and steps and who succeeded anyway was unusual, and anyone not following the above rules and steps and did not attain the (implied) promised rewards was doing it wrong. Hadn't tried hard enough. Needed to (cue music)...

... pick themselves up, dust themselves off and start all over again.

It's what the Republicans believed, so I voted Republican, as did my parents and their parents before them.

Then things got sorta wonky.

Despite following all the rules (I had employment, church, a marriage, a mortgage, and the appropriate number of children) everything fell apart.

My marriage ended. My church looked at me sideways. I had a hard time on my own keeping the house...and the children.

What the hell?

Surely I had done something wrong so I...

...picked myself up, dusted myself off and started all over again. In Texas.

I worked damn hard- two full time jobs- one day job and one night job. I bought a house and found a (tremendously fabulous) husband. We had a baby.

I did not find a new church. Though I had no quarrel with God, I was kinda miffed at the church for abandoning me. That was the first paver on the path to being a non-conservative.

But still I voted Republican.

Then Ward got sick.

He had insurance through his job- a job he'd held for well over five years and had never missed a day of work. Ward's cancer took a fair amount of time to take care of- several surgeries and hospitalizations and all of it painful, awful, exhausting, disfiguring. The man never took a minute to recover. We drove to the cancer hospital the day before surgery (or 2 days before if pre-op appointments were needed), he had surgery, was discharged from the hospital, we'd drive home the next day and the day after THAT? Back at his desk at 8am.

He worked through six weeks of radiation.

He worked through it all not because he loved his job- frankly he didn't. He hated his job and it was killing his soul to be there. I'd watch him go off every day and my heart would break seeing his shoulders stoop a little bit each step he took to the car. He worked because it was the right thing to do...and he needed the insurance.

It ended up not mattering.

He got fired (sorry- "downsized") because the company was going in another direction and for losing a lot of work time "to this cancer-thing".

COBRA was hideously expensive- it would have taken his entire salary just to pay for it, except he didn't HAVE a salary anymore. The high-risk pool wouldn't take him till he was ineligible for COBRA and had used it. He was without insurance. And with cancer, heart disease, and diabetes.

The next scheduled scans we were told had to be paid for in advance, in cash, no exceptions. No matter that he'd had insurance up to that point. No matter that he'd been approved for Social Security Disability that would take effect a few months hence. No matter he was already a patient. We were told that if we couldn't afford the scans, we could wait till the SSD kicked in and that "He probably won't die before then".

Said the little girl in the business office with no medical experience.

I started looking hard at those around us. ALL those around us. Alot of them what I would've considered "slackers" in my younger years.

People losing their homes, their jobs, their everything due to illness, due to the economy, due to circumstance beyond control.

And it had nothing to do with how hard they worked, or how fervently they prayed.

Shit Just Happened.

The whole "work hard/pray harder/be rewarded" ideology turned out to be a house of cards, a smoke screen, fallacy and fairy tale.

I couldn't stomach the discourse anymore. Because I knew better. I had seen the Truth, and it was bitter.

Here's the thing.

You'd think it would be claw yer eyeballs out scary to know that all of the by-the-book-rules that form the foundation of conservative society are hogwash, but it's really not.

After the initial "HOLY SHIT WHAT DO WE HOLD ON TO NOW???" moment it's crystal clear.

We hold on to each other. Help each other. Care for each other. Respect each other.

Whether they "look" like they "deserve" helping or not.

Because the truth of the matter is it's not OUR place to judge. It's our place as card carrying members of the Human Race to care for each other.

Not tell each other what to do, how to live, what to think, how to vote, what can be done with your own personal body, how much care you or your loved ones have EARNED according to some bullshit manual or doctrine- part of being human is the acceptance and respect of the Free Will of others and compassion for their distress for Yea Verily all of us will at sometime or other be so distressed...or worse.

I stopped being a black/white right/wrong conservative not because I couldn't play by the rules I grew up with, but because I realized that the only way to "win" using those rules is to be lucky. Literal Dumb Luck. Merit had exactly zero to do with it.

I became a tree-hugging bleeding heart liberal not because I go through life wearing rose-colored glasses and wearing flowers in my hair, but because I don't. I see injustice and I hear intolerance and my hair is gray and my soul weeps.

Life is hard. Shit happens willy nilly and without warning or reason.

And though we may FEEL more secure holding onto false truths and bogus rules, we'll BE more secure once we realize that the only safety net consists of...each other.

Beyond Father's Day

My older two children- the ones that aren't children anymore being all grown up and whatnot- are products of my first marriage.

I had at least enough sense to not have any children with my second husband.

This "new" child- a mere 10 years old- is a product of my third marriage.

My husband (the third one- the GOOD one) has no other children even though he had a former wife. When I expressed my desire (pun intended) to have another child before it was too late- I was looking the big Four O straight in the eyes- he said "I don't know what the big deal is- any animal can reproduce".

About a year later he found out what the Big Deal is- actually the first time he felt that little critter kicking and punching inside me he started getting an inkling of the Big Deal-edness of the whole thing.

So we have this boy.

When alot of men, especially those who've never had to share their wives with anyone else, have children, they are adament about the baby sleeping IN THE CRIB.

We had a nursery set up in the big bedroom next to the kitchen. Three rooms away from our room.

Ward said "You can't put that baby in there- he's spent nine months right next to you and he'll be all alone way back there. In the dark". So that baby moved into the bed with us, and there were many times I'd wake up to see them staring solomnly at each other.

Ward's never talked down to Alec- has always treated him as another human- not a baby, possession or toy, and never an annoyance.

He has the patience that the saints WISH they had.

So, wait.

YESTERDAY was Father's Day, what's the lame idea of writing about this NOW?

Today we went in for the initial consultation with the occupational therapist for Ward's outpatient treatments- and though he's still almost 50 pounds underweight with all the weakness, lack of stamina and strength that go along with that, the main concern is his right shoulder.

Not this surgery (either one), but the LAST surgery over 2 years ago, they harvested a muscle from his back for the graft (the graft that failed necessitating THIS surgery/surgeries). This muscle holds the shoulder blade in place. When he had things like tissue and muscle back there, it was apparent that there were issues with that area, and truth told, he was supposed to go for physical therapy at the time but he was still frantically trying to hold onto his job for the insurance he so clearly needed to have, so he/we blew it off.

Now with nothing there but literally skin and bones, it's clear that he's really compromised in that shoulder- the blade pops out of place with little provocation and the entire area hurts like a son of a bitch most of the time.

So the therapist measured his reach, mobility and strength and recorded all of it. He had to fill out a ream of paperwork telling how difficult it is (on a scale of 1 to 5) to do things like lie down, kneel, balance, go up and down stairs, etc. ad nauseum.

At the end of the session, she asked him "Mr. Dixon- do you have any questions? Is there something in particular you want to be able to accomplish at the end of our working together?"

Ward loves to walk, to hike, to camp, to garden, to work on our property, to travel and sight-see everything from National parks to museums and I expected him to answer with any of these things.

But he was quiet, head down for a moment, then he looked past me to Alec- obliviously reading his latest Star Wars novel- and he softly asked

"Do you think I'll be able to throw a ball again?"

Today We Went to the Zoo

Sounds mundane, but in our case, it's not.

We went to the zoo for our first date- 15 years ago yesterday.

Both newly divorced and pretty traumatized, we'd been friends- good friends, best friends- while we were each witnessing the deaths of our marriages, marriages that we both valiantly tried saving, even though we could see the terminal hopeless status of the other's situation. Afterwards, we fell apart in the aftermath and though it looked alot like "rebound", what we fell into was a deepening of our friendship, our very real concern for the other's happiness and well-being. We fell into love.

So we went to the zoo on June 10th, 1995 and about halfway through it Ward took my hand in his.

Even though we like the zoo, and go to the zoo several times a year, we always go to the zoo on June 10th.

We went to the zoo alone the first few years, but then had company- first a tiny baby of 4 months old, and each year a bigger and bigger boy- this year a young man of 10 almost as tall as myself.

We went to the zoo in the rain at least once- speedwalking through the deserted park with the animals peering out at us from their shelters, amused and bemused.

We went to the zoo when we were both employed and I'd pick up lunch, meet Ward at the picnic tables, inhale the food and barrel non-stop around the familiar route before a quick kiss and pointing our cars back to work.

Yesterday was June 10th. It was pouring rain- the rain gauge a few miles from here read 5.6 inches in less than 24 hours, though I've heard rumor of closer to 7 inches. There was thunder and lightning and we did not go to the zoo.

Today we went to the zoo.

Ward has endured so much these last few months- less than 8 weeks ago medical personnel were encouraging me to put him in a nursing home, and a wheelchair has taken up residence in the trunk of our car. He's painfully thin and fragile looking, tires very easily and is in almost continuous discomfort.

Today my husband walked around the zoo- refusing to use the wheelchair.

And I marvel in every tiny miracle and cherish my husband and my son- both so courageous and kind, intelligent and hilarious and though it seemed like the most normal average thing for a family to be there, walking around looking at the animals and enjoying sno-cones and animal crackers it WAS a miracle to us- and not a tiny one because there were more than several moments over the last few months when we were deep in the bowels of the cancer hospital that I couldn't hope, couldn't imagine, couldn't even aspire to think that we'd get another chance to say, casually

"Today we went to the zoo".

Giving Up the Illusion of Control

I'm an ornery ol' cuss.

Oh, I know on the outside I look pretty harmless- a half century old hippie chick with long graying hair, smile lines around my bi-focaled eyes, and gravity obviously luring my "pointier parts" back into Mother Earth. My wardrobe's from Goodwill, I am loathe to wear anything but flip flops, I spend no money on makeup, manicures or haircuts, and wear jewelry I've made out of natural stones plus a few cherished but simple pieces.

Not a very formidable front.

But on the inside I've always held that Sicilian Mama belief that most things in the world flat can't run without me at the helm. No one can cook like I can. No one can clean the house like I can. No one can pay the bills, organize our son's schooling, run my place of employment and the home farm like I can.

Without me supervising, my entire family would be wandering around outside, unfed, unbathed, probably pants-less.

If anyone offers to help with any of the above, my answer has always been "No thanks- I'll take care of it".

And I did, for a very long time.

And I still do, mostly.

But something happened about 4 years ago. My husband's health needs made it impossible for merely me to take care of everything. We were required to spend large amounts of time away from home, and that took me away from the helm, the rudder, the gist of the matters and left me relying on...other people.

This rankled. Alot. For I still thought I could handle everything alone.

But much as I wanted to- there was no way to feed and care for the farm while I was 200 miles away from it. Friends and neighbors stepped in and even though they did not do everything exactly as I did, nothing died. In fact, a few things they did differently were so sensible, I smacked myself upside the head in wonder that I'd been doing them otherwise for years.

And much as I wanted to- there was no way to be at my place of employment at the same time I was at the hospital with my husband. So I learned to delegate, and found that my employees were not only willing to help, they were happy to help out and take on additional duties for the duration. And the business did not go to hell in a handbasket.

And even when we ARE home, I've learned that my family consists of intelligent, innovative humans who have both complex thought processes AND opposable thumbs and that they are capable of helping out on the home front.

The boys cooking dinner with the help of Mrs. Stouffer's every so often will not kill us.

Boys who dust AROUND knick knacks instead of lifting them and dusting under them do not cause a rift in the time-space continuum.

My husband can, and does, teach our son with a patience and imagination I could never achieve.

They can even (mostly) remember to wear pants outside of the house.

The most difficult thing of all had to do with money.

Alot of our friends and family live far away and cannot come give actual, physical, haul the hay collect the eggs scrub the toilets help. But they want so badly to ease our pain, our hurt, our difficulties that they send their love in the form of cash.

This bothered me more than anything else, this sending of money. It smacked of neediness, of helplessness, of weakness.

So I'd refuse politely but firmly, sending money back to the gifter while simultaneously worrying about how to pay for the next medical disaster.

Until.

One of my friends lost patience with my bullheadedness.

She railed at me in frustration- demanding me to put myself in their shoes, to reverse the roles. "What would YOU do? If any one of us needed anything you'd be there to help in a heartbeat, and if you couldn't come personally- YOU'D SEND MONEY and be offended if it were returned".

She told me that by not allowing my friends to help us, I was doing THEM a great dis-service, denying them the only option open to them to ease my family's distress, our worry, our hardship.

I learned to say "Thank you" graciously and sincerely.

When asked what we need, I've learned to answer honestly with our current concerns instead of saying "Nothing, we're fine", when we so clearly are not.

Oh, don't get me wrong. I'm still a nit-picky eagle-eyed terror on medical staff and am daily an unreasonable harpy to my family.

But I've learned now that I don't have to shoulder the entire load the entire time the entire way- that the only one who even expected that of me was...me.

Homeless and Hopeless in Hermann Park

Houston Texas has a huge homeless population. Not surprising since it's the 4th largest city in the US, and it's blessed with being in a very mild climate.

You see them everywhere, if you pay attention.

Under overpasses cardboard walls crumple in on meager possessions that only look like refuse to most of the rest of us.

Tucked into empty lots, backed into doorways, people lost from within and invisible from without wile away the days that all must run together in a never-ending procession of nightmare and surprise.

We noticed the Houston Homeless on our very first trip there. Those first years' pilgrimages to the cancer hospital included our little dog who would go to Doggy Daycare while we were otherwise occupied, and Doggy Daycare was past the hospitals, past Hermann Park, and just past the Museum District.

That first morning we were stopped at a stoplight in front of a church. Not Sunday morning, yet the entire yard was filled with a queue of humanity quietly silently awaiting entrance. It's a soup kitchen.

Where the Homeless go during the day I'm not sure, but one winter evening we were retrieving our little dog just after dark, and though the parents and children, bikers and joggers had long left Hermann Park, the Homeless had appeared like Ghost Moths- hovering lightly and and almost luminously in their nocturnal perches.

I was so preoccupied with my husband's health, I didn't give much thought to the Homeless of Hermann Park till we were faced with an Incident.

Illness has taken a great financial toll on our family- we no longer have a credit card, and very little cash. I try to bring as much extra cash as I can, "just in case", and this particular trip I had brought 7 days' worth of cash for what was supposed to be a 4 day trip. My husband contracted MRSA in hospital and we were there 10 days, not 4. Not 7. Ten.

Now, the hospital allows patients to cash a personal check a day for up to $50.

Our hotel room was $65 per day.

I was able to cobble together enough to survive, stay in the hotel, eat, and coast home on gas fumes, but that little episode gave me pause and I couldn't help but wonder

How many of the Hermann Park Homeless have family members in one of the many hospitals of the Hospital District? We came perilously close to "camping" in our auto that last few nights. What if I'd been OUT out of money, not just ALMOST out of money? What if my husband had been delayed by MONTHS instead of days?

In the last 8 years we've been with insurance, without insurance, and on medicare. Ward's been employed and unemployed. We've had medical trips when we've had money and medical trips when I've literally felt like I've gone begging for funds.

But the one thing that's been lurking at the back of my mind- behind the weedy shrubberies and crouched next to an old shopping cart- is the knowledge that like so many people who are "one paycheck away from eviction", without our safety net of family and friends, we'd be truly and honestly "one medical procedure away from living in Hermann Park".

What happens when the money runs out before the medical emergency is fixed? We're currently here 2 weeks and with no foreseeable date to go home- ground to a halt by a snowballing hairball of unexpected complications. We thought we'd be here 5 days- 7 at the most. We've got options, and support, and more love than a family can absorb without overflowing, and we're OK. We can weather this storm under roof and with full tummies.

But what if we didn't have those options, support and love?

What if we didn't have a computer that linked us with people around the world who care about us? What if I'd been working several jobs to keep ahead of disaster while caring for a family and ill husband and didn't have the time, energy or heart to make and keep friends who we could fall back on?

What if we were truly alone, as so many families are in our fragmented society?

I refuse to leave Ward here, trapped helpless and afraid in a hospital bed. If I had to, I'd live on a park bench to be with him every day.

How many of the Hermann Park Homeless are doing just that- is that why they seem to disappear during the day? Are they next to the bed of a loved one- holding a hand- reassuring them that everything is alright although it's anything but?

The Hospital District in Houston is the largest in the WORLD- just this cluster of hospitals employs 65,000 people- every one of those hundred or so waiting in the soup line could slip into any one of those great maws of medical care and be totally not noticed in the crowds.

And how many have left the hospital for the last time- mechanically leaving the empty shell of the worn out patient- going through the motions of walking, navigating hallways and crosswalks on automatic pilot- their bodies weighted to the earth while their sanity frantically flutters after the soul of the one just lost- up, up and gone- not caring what happens now to their own broken-hearted shell.

I wonder about these things.

But I'm mortally afraid to know the truth.

Spare Me the Drama, Mama- I Crave Some Mundane

I vividly remember our most recent family hug.

It was Sunday night, four days ago now.

Much like any other of a million family hugs- Ward, standing tall and strong, myself wrapped in his left arm, his son wrapped in his right- the three of us twined into a human pretzel held together with comfort, love, and familiarity.

We were only slightly inconvenienced by the IV's and drains attached to Ward, and the IV stand didn't get in our way at all.

It was a good hug. Nay, a great hug- filled with relief and exhaustion and joy all mingled together. Ward was absolutely and completely light-at-the-end-of-the-tunnel into healing after a very rocky week following what was supposed to be a pretty routine, albeit extensive surgery.

Alec and I left the hospital feeling good, Ward went to bed feeling good- we all anticipated Ward's release from the hospital by Wednesday at the latest.

Wednesday. Yesterday.

I'd fallen asleep fitfully- I'd caught a bug in hospital after a week of worry and sleeplessness and eating sparsely and horribly- and was just then feeling the full effects- dizziness, nausea- when the phone brought me suddenly, adrenalin-ly, sickeningly awake at 1am.

Ward needed emergency surgery immediately. In the middle of the night. But they assured me it would be a quick fix and he'd be back in his room by lunchtime Monday.

It didn't work that way and he's now lying in ICU attached to a ventilator and in congestive heart failure.

And I wonder whatever happened to "normal".

I asked my son yesterday if he could even, in his ten year existence, remember a time when our family life didn't consist of hospitals, operations, recovery, repeat. And though he made light of thinking it over, he was serious when he said "No. Not really".

I'm trying to come to terms with our new reality- not our beloved old knock-around house at the edge of Brownsboro TX (pop. 756)- chickens in the yard, turkeys on the porch, drifting off to sleep to the chorus of millions of spring peepers down by the pond, but this hotel room in the middle of Houston (4th largest city in the US of A)- the non-stop cacophony of helicopters and ambulances rushing to the hospital district glowing just a few blocks away.

And as crushing as living here with no set ending, no date we can circle on the calendar, is- we refuse to leave without Ward. He's here. We're here. They tell us it's going to be a "very very long haul" but that's fine as long as we're all here and all together.

I've known Ward for 16 years and we've been a couple almost 15. This is not my first go-around on the relationship/marriage train, but this is the only time I can honestly say there's never been one minute- one second- that I've ever thought "Hmmmm- this just isn't working out".

Ward's the best friend I've ever had, the best father I could ever imagine for Alec, and truly the Love of My Life. And even though I'm surly, argumentative and difficult, for some reason he feels the same way about me.

But while other couples- even those who still love each other deeply- stagnate and flounder a bit under the day to day child raising and working and bill paying, wishing for some excitement to knock the dust off of their routines, we crave the opposite-

Quiet. Normal. Boring. Stay-at-home Life.

I know, from tuning into every morsel of his being wrapped up, trussed up, invaded and hooked to machines that surround him carnivorously, that he can hear me. I hold his hand, and talk to him, and at sensible times there are signs- the twitch of his hand in mine, the raising of an eyebrow, the flicker of an eyelid, the rising or lowering of his blood pressure all tell me he's fighting as hard as he can- that no one wants to go home more than he does.

So we wait. And I keep him company, holding his hand and reading aloud to him in an almost insane caricature of normalcy. I pretend not to notice the nurses and others coming in and going about their medical business- the business of keeping my husband alive till his body is strong enough to once again keep itself alive.

And outside the hospital walls, I meet other people who complain petulantly about the irritating habits of spouses, or the boredom of their jobs, or the tiring mind-numbing chores inherent in the raising and training of children and they look at me like we're all in the same secret club and ask "Yanno what I mean?"

I think of what I wouldn't give right now to find beard hairs in the bathroom sink, or a collection of half empty soda cans abandoned around the house, or even to simply be at home in our own bed- together.

And I can't even feign thinking about it before answering, "No. Not really".