Times They Are A’Changing

It’s true what they say–the less you write, the harder it is to write. It’s been a month since I’ve written here, and I suppose it’s about time.

The past month has been one of enormous change. But aren’t they all? We like to think we’ve got a handle on living, a sense of what’s coming, a method for navigating our particular circumstances, but that’s an illusion–or at least I think it is. Things are changing all the time. Things are enormously changing all the time, but mostly we don’t notice.

Take Peanut for instance.

In the last month, Peanut graduated from high school, enrolled in college, and flew off to New York for a quick five day trip with her lucky mama–that’s me. I hadn’t spent that much alone time with my girl since those first almost three years of her life–her older siblings were in school every day and her little brother hadn’t been born yet.

Peanut was not what you’d call a “good” baby. She cried a lot. She wanted to be held non-stop. But I had time, so I carried her with me everywhere, and I taught her to love the up and down motion that occurs when your mother is doing squats while holding you. This turned out to be a pain in the ass–MINE–pun intended.

But you know what else those early years with children taught me?

You never get it right.

Babies and toddlers are constantly reminding us that we have to go with the flow. And things are always flowing with those tiny growing beings. Just when I thought I had Peanut on a sleep schedule, she got a cold and the sleep schedule went out the window. Just when I thought I had a pretty good meal plan going for Sheldon, her little brother, he tossed his chopped broccoli sopping in butter to the floor and has not since eaten a green thing.

Pema Chodron, a Buddhist nun, in one of her many books or interviews or online classes says that change is always occurring–at the cellular level. IN other words, there is no stasis. (Forget for a moment that I did not direct you to the quote or section in her work and decide for yourself that you will look her up, order one of her books, listen to one of her many teachings on the Internet, and you will be forever changed although according to Pema, you already are.)

We cannot stop the march of time.

Cells reproduce and die, neurons snap, wounds heal and reopen and heal again. Children throw gloriously ridiculous purple faced fits and then sit calmly for hours. Hawks hatch from big hawk eggs in a nest down the street and fly away before you can zoom your binoculars in to get a look. Bird shit is washed away in the next rain and you’ll never find that nest again. This is the way it goes.

I fight change all the time. And fighting change is a hopeless endeavor, a losing battle.

I tell myself all the time–you’ll never get it right. I know it sounds pessimistic, but it’s actually pretty damned freeing.

A long time ago, when my two oldest children were toddlers only 15 months apart, Anne Lamott told me (no, not directly, but I like to pretend we are friends) that I was going to fuck up. It was a revelation to me. I remember nodding my head in wonder and relief because I was an uptight little mother worried about every tantrum, every banana not eaten, nap missed, watering eye, runny nose, all the scabs and bruises and those breathless NOs screamed with a demonic ferocity before red-faced and tightfisted my child collapsed into a writhing mess on the dirty vinyl floor.

I’m gonna fuck up, I thought. And everything changed. If I was going to fuck up, I might be able to just enjoy this glorious mess we call life.

Of course, I never remember this, but I’m a wee bit lucky because my kids and my husband are experts at reminding me that we all fuck up.

I hope they never stop because when I stop worrying about fucking up, I start looking around, amazed and awed by the ever-changing landscape that is life.

 

What Jimmy Kimmel Said

63 years ago, an 11-year old boy who loved baseball sat right next to his mother while a kindly old pediatrician explained to him–you have a hole in your heart. This meant for that young boy, no baseball, no track, no basketball.

I imagine this appointment broke that little guy’s heart, and his mother’s too. They didn’t have a lot of resources, and whatever disappointments they were handed, they took chin first. I have a picture of them in my mind, sun filtering through a high dusty window–dust motes flickering in the air. There were no tears.

Not quite 20 years later, my dad had open-heart surgery at The Cleveland Clinic to repair that hole in his heart. He had a scar that began at his belly button and traveled up almost to his collar bones. My mom remembers seeing him for the first time post-surgery, the breathing tube running into his throat–he looked like he’d been hit by a Mack truck. Family legend has it that her knees gave out and she sank to the floor right where she stood.

He survived the surgery (and another one 40 years later) and continues to live even though his heart still gives him the business. But his heart disease was a pre-existing condition. My parents spent the next 40 years, making sure that he had some sort of employee-sponsored insurance plan, and my dad worked his damn ass off–that’s for sure. But when he changed careers late in life, my mother went to work to make sure they had insurance. It wasn’t a given–not until they aged into Medicare.

 

***

30 years ago, a skinny college student with short hair, packed up her 1974 Dodge Gold Duster and drove home. Her parents were admitting her to a psych/eating disorders unit with her consent. She could no longer remember eating a meal that hadn’t been fraught–food was both enticing and frightening. She couldn’t eat with control like other people. The vomiting. The shame.

For close to 60 days, I lived on a split-third floor in a residential psych hospital. Half the floor housed mood disorders and half the floor housed eating disorders. There was overlap. I was not cured when they released me a few days before my 21st birthday, but the long stay did disrupt the cycle of binging and purging that marked the hours of my days.

There would be no more treatment. I now had a pre-existing mental health condition. Insurance companies could attach this nifty little thing called a rider to insurance policies. A rider excludes coverage for certain conditions. I aged out of my parents’ policy because I was no longer a student and I was 21, so insurance was out of the question until I was married and on my husband’s policy. I learned quickly to omit those 60 days from my health history.

***

In 2013, my 14-year-old daughter lost 25 pounds, drank a ton of water, and stopped menstruating. I thought she was following in Mom’s footsteps, but I could find no evidence that she was purging. In fact, it was weird, she was drinking sodas and gobbling down big bowls of Captain Crunch and Frosted Flakes. She had never been a sugar girl. She’d always preferred popcorn to Pop Tarts, peanuts to pie. I couldn’t figure this one out.

There was the strange issue about her smell though. She smelled like fingernail polish remover. I sniffed her. It drove her crazy. I sniffed her some more. She frowned and pouted and peed like mad. It took me a day or two of sniffing, but finally I looked it up–breath that smells like fingernail polish remover. And there it was–diabetic Ketoacidosis.

The nearest children’s hospital is almost three hours away. The ambulance was just the right size for the nurse and the IV delivering life-saving insulin and my daughter. I tried to climb in there with them, but there wasn’t enough room, so I had to travel with my husband. It was a quiet trip.

Insulin, test-strips, meters, needles–they aren’t cheap, but they cannot be done without. Type 1 Diabetes is an auto-immune disorder. My daughter’s pancreas doesn’t produce insulin. There is no option for discontinuing treatment other than death. As we prepared to leave the hospital–to begin our post-diabetes life, the social worker told us–You are lucky the affordable health care act is in place. She was even a little scoldy, perhaps she was tired of arguing the ACA’s benefits–without Obamacare Type 1 Diabetes can be a nightmare for young people.

***

Just last week, while I sat in a hospital room with my dad who was soon to have his  heart shocked back into a sinus rhythm after a year of atrial fib, the House of Representatives voted to repeal and replace certain provisions of the Affordable Care Act.

While our president mouthed all over the place that pre-existing conditions would continue to be covered, the  new provisions allow states to apply for waivers that would let health insurance companies offer paltry policies. These policies wouldn’t be required to cover the 10 essential health benefits mandated in the ACA. States who wanted the waivers would have to set up so-called high-risk pools — to protect insurers from high-cost patients–like my sweet daughter.

My daughter, Peanut, and is 18. She graduates high school in one week. She can remain on our health insurance policy for 8  years. But what happens when she leaves our policy? What happens when she graduates college but finds a job that doesn’t offer employer-sponsored health care? She can’t go one day without insulin. How does she survive?

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Peanut on her way to Prom May 2017 (dad and Wonder photobombing in back left corner)

Here’s what a caring gal told me on FB about my concerns: if one of my four children was in a position where medical premiums or costs were incurred I would advise them to disconnect their internet, get a cheaper car or take the bus, and eliminate things that weren’t essential to take care of that responsibility.

I couldn’t respond to that.

How do you respond to that?

I guess this post is my response.

I’m going to leave you with Jimmy Kimmel who said it all so well.

A Story About Type 1 Diabetes

Four years ago today, my daughter Audrey was diagnosed with Type 1 Diabetes. This is our story.

The 49th Year

I smelled it.

Untreated or undiagnosed or unacknowledged Type 1 Diabetes smells like fingernail polish remover, and I smelled that on my 14-year old daughter, Peanut, three years ago today.

I was the only one who smelled it, and I smelled it for a week, on her breath and on her skin. I sniffed her for a week while she slept—and she was sleeping a lot—while she ate, while she watched TV. This irritated her a great deal, and I can see why. Every time she turned around, there I was with my nose in her hair, or trying to get a whiff of her breath. I knew something was wrong.

There were other symptoms, sure. She was losing weight which could be explained away by her age—14. She was hormonal. Her body was changing. Things were shifting as she grew taller. She was eating strange things like Frosted Flakes…

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