So, 2013, yada yada yada, Mexico

It’s been a while.

Between Facebook and once again writing regularly for the North Coast Journal, I don’t turn here as often as I once did. And since my children have – for the most part – grown too old to use as fodder and since I am no longer chronicling my surf sessions, well, what would I write about?

It’s been quite a year.

But aren’t all years? Not one year of my life has passed after which I thought, Oh, wow, what a nice, dull time. This one started with our wonderful yellow mutt reaching the end of her 14 years. The following month marked the termination of a decade-long friendship. An important family relationship turned inexplicably distant. My youngest child graduated from high school, the middle one moved on to Santa Cruz and college. In June, I received notice that my beloved job will officially cease to exist as of Dec. 31. Another friendship fell apart. The endodontist says I need two root canals and the dentist found nine cavities in my son’s mouth and I have no idea how I’m going to take care of all this when the insurance only covers a percentage in the first place and time before losing what little coverage I have is running out.

Insert obligatory #firstworldproblems acknowledgment.

Of course, a stream of good things happened, too – they always do, preventing me from sinking too far into self-pity. Foremost, my children are alive and relatively well. I reconnected with old friends during one visit to Long Beach, another to Portland and yet another to San Diego. We reminisced, as people do, about the crazy things we did – that trip to Ensenada where she ended up in the closet with my future husband’s roommate and I broke the top off a Cherry 7Up bottle in my desperation to quench my hangover-induced thirst. That time I was super stoned and pulled what I thought were eyedrops out of my purse, but it was lotion and I didn’t realize it until I’d squeezed globs on top of both eyeballs – a story that apparently never gets old in the retelling. Those days we stayed past close in the bar, too blown away by some great band that had played to stop drinking – or because we needed to vent about how shitty the band was and how annoying the NA crowd could be with their ceaseless demands for coffee refills and emptied ashtrays.

Despite differing political and social views, visits with family members were lovely and free of debate. My previous writers’ group stopped meeting years ago due to the demands of children, husbands, jobs, life, but the women who made it up continue to be on the other end of late night/early morning emails most notable for being pleas of Help! How do I cope with this crisis? How do I get through another day fraught with too much to do and people going nuts? They always have answers – or for the unanswerable, comfort. I needed a lot of that this year. My new writers’ group delights me. Who am I to deserve such an abundance of smart, kind, funny, creative people populating my world?

From the people I work with – at all my various endeavors – to the people who showed up for my husband’s ridiculously fun 50th birthday, I am, for lack of a less hackneyed word, blessed. (Thoughts on friendship distilled here.) My job, albeit ending, has provided a leg up in the world and experiences I never expected: Taiwan, for example, adventures in D.C., even more intimate knowledge of our coastline, a hand in creating concrete protection for it. Health care. Experiencing what being able to pay one’s bills is like. I’ll miss it desperately, sure, but future opportunities are promising and for the time being I’m still privileged to write, occasionally, for both the Lost Coast Outpost and the NCJ. Those days when keeping all the magic going threatens to send me sobbing into anxiety-riddled nervous breakdown, I can still walk out my front door to the beach. Life is so very much work and yet continually proves to be worth it.

And I’m leaving for Mexico tomorrow.

This trip will be only my second out of the country (not counting ill-fated teenage trips to Baja), made possible by the generosity of a friend with a house there and judicious use of frequent flyer miles. To say I’m excited is to say a hummingbird is bit of a speedy creature – my heart is beating faster than those wings with anticipation. I wanted my husband to come so that we could have a shared adventure, celebrate this dawning new phase of our lives in which our children are grown, but alas, his desire to avoid flying supersedes his desire to trip along with me to exotic locales. The consolation option is no less wonderful, however – lieu of romance, I have two of my best girlfriends accompanying me, both so easygoing that my only concern is now I’m in danger of being the uptight one. I’ve wanted to travel forever. And I’m leaving both cell phone and laptop behind, so ready to disconnect that keeping focus through the day seems nearly impossible. I have a stack of books. Oh, to read novels again!

I fear I’m too happy about this.

Sometimes I’m compelled to reiterate, it’s not easy, this life. It’s much easier now that I’m not working 60 hours a week between two jobs that still didn’t pay enough to cover life’s expenses, fun as they were. A living wage directly improves one’s world, no question. But a lot of struggling and stress existed between finding myself pregnant at 19 and finding myself landing a dream job 20 years later. (I’m always finding myself!) Even under ideal circumstances, raising children challenges the most patient of adults. Our circumstances were far from ideal, lacking in both family support and cash, our son diagnosed with an as-yet incurable disease. And I am not patient. But – to get hackneyed again – love keeps getting us through.

So I can’t write about my kids very much because they’re adults or very nearly. (Also – disclaimer – because I hope to contribute a column to the NCJ’s new “Offsprung” series, so I can’t go on too much about how, despite what a vast number of well-intentioned people say, having adult children does not, in fact, make a parent “done.”) The nearly-adult status of my son also means I can’t write about my son’s diabetes like I used to. For the record, it’s still scary. Scarier in some ways because he’s opted to take on more responsibility for his care. He now inserts his own sets, checks his blood sugar on his own even in the early morning hours. I have not stuck a needle in the kid for months. Hardly a thing to miss – but like all aspects of letting go of controlling a child’s life, one that brings anxiety along with the relief. Who will take care of him if not me?

And since, for the first time since I began surfing, I’ve stopped counting my yearly surf sessions, I have no obligation to chronicle them here – by permitting myself the freedom from tracking, I inadvertently did away with a steady writing prompt. Alas. I have surfed and not surfed. Weeks pass and I freak out and suddenly I’m zipping down the spit, truck loaded, blood racing, my need to be in the water as primal as hunger. I don’t do things for a while and then worry I’ve forgotten how to do them. Surf. Make pancakes. Read. Write a blog post.

Thanks for bearing with me.

Checking in

It’s not that I haven’t been inspired to write. Thoughts blossom in my mind, begging to be pressed onto a page. But sometimes I’m driving and sometimes I’m sleeping and sometimes I’m just lazy and sometimes I just Facebook instead.

There’s also another problem: I can’t write about parenting because my children are too old for me to write about them. Or at least for me to do so without potentially embarrassing them. Two of the three are adults, technically, and the other is close enough. Who wants the angst and struggles of their teenage years, their early twenties, blown up for the world to see? If I were the sort of person to drop to my knees and pray nightly, I’d thank God for staving off Internet popularity until I was well into my 20s. Regular film was bad enough.

So I won’t write about how I worry, about how telling the difference between “normal” teenage drama and “put your kid into psychiatric counseling” teenage drama is about as easy for me as – as what? My mind seeks a metaphor, but all suggestions fail. Who did I talk to today? One of my friends who assured me everything will be okay because, after all, look at what we did and we turned out all right? One of our family friends who appreciates coming home to happy animals and a clean house? “They’re great kids,” people say. And they are. Helpful and funny and morally outraged in the right direction. But sometimes I can’t tell the difference between raising teenagers and walking over red hot ploughshares.

(I see why people turn to religion in these times. When logic no longer applies, faith and prayer manifest as logical options.)

What else am I not writing about? Surfing. I’m pleased to find myself in the water again and lighter for being unburdened from chronicling said misadventures. Kaylee and I traveled to Santa Cruz so she could check out Cabrillo College. We braved the rocks and locals of Steamer Lane and fought through the kelp at Pleasure Point. The Lane’s offerings hit us at the knees, but at Pleasure Point I turned around after catching a wave to see K dropping down a face at least two feet over her head. I hollered and thumbsed up as if she were eight again and paddling into waves by herself.

Memories tied to moments and I hold fast to the rope.

Thank you, President Obama

The clock edges toward midnight. Fifteen more minutes and I can check Nick’s blood sugar. Hopefully the carbs from the pasta, pie, ice cream and eggnog will have been properly mitigated by the insulin being pumped into his body. Usually I try to encourage fewer carbs and earlier eating at night, increasing the odds of getting a relatively good night’s sleep. For all of us. Today’s his birthday, however, so when he poured more eggnog, had another piece of pie at 10 p.m., I just smiled.

Tomorrow’s Election Day, of course, and, as we step through our fifth year of dealing with our son’s Type 1 diabetes, I think about how personal the presidential election feels this time around. Of course, it’s always personal – I’m a woman, I have daughters, I’ve spent a few years on welfare, I’m drowning in student loans – but the threat of losing the small, huge promise of the Patient Protection and Affordable Health Care Act provokes a reaction so visceral that I am unsure I can remain civil around anyone who dismisses it. Because repealing “Obamacare” is a threat. A direct threat to my son and our ability to provide the medical supplies that keep him healthy and alive.

When he was diagnosed, doctors ordered us ambulanced from the local ER to Murray Field. A medical plane flew us to SFO, where another ambulance greeted us, transferred Nick to UCSF. He was that sick. Restoring his health took almost a week. Six days of learning about a disease I’d barely realized existed. Six days of transforming him from a fading, skeletal boy back into one who could walk out of the hospital and into a new life in which, while he would never be quite “normal” again, with the right supplies, he could live as though he was.

The cost of that life-saving intervention?

I don’t know.

See, we had Medi-Cal for the kids at the time, so the cost was covered by that much-maligned government program – the one thing I didn’t have to worry about in the thick of facing the fact that my son has a currently incurable disease was how I would pay for all the care it took to save his life.

I do know his insulin pump costs $3,600 and his regular supplies would run about $800 per month if we had to pay out-of-pocket. (That’s not counting all the glucose tablets and Starbursts we need to keep around.)

After his diagnosis, those regular supplies – insulins, syringes, glucometer, test strips and glucagon – were covered under another government program, California Children’s Services. The government did a fine job of keeping that safety net stretched taut beneath us.

Then, three years ago, I landed a better job with private insurance, so now we pay $20 in co-payments for each prescription – an increase in our expenses, but an improvement in our social status.

But even with the miracle of private insurance, I couldn’t rest easy. I still worried about what would happen if/when my project-based job ended, how Nick would ever have health care again with such a pre-existing condition.

When the Patient Protection and Affordable Health Care Act was signed into law, making it so insurance companies would be forbidden to exclude my son, regardless of the diabetes, my chest expanded. My shoulders settled. I breathed a little easier. What I see is my government doing something to protect people, people like my son, my whole family, others in the same boat. Obamacare ensures that Nick will be able to get the medical attention and supplies he’ll need. Which means he’ll be able to not only survive, but thrive, to be the strong, smart, helpful kid he’s always been – and have a chance to grow into the good man he’s meant to become.

The Republican Party, with Mitt Romney as their representative, wants to take that away. (They want to take a lot away.)

For my son and all the other folks out there who saw their medical options blossom with the passage of the Patient Protection and Affordable Health Care Act, I thank President Barack Obama. I plan to show that gratitude tomorrow, in the voting booth.

 

(Updated Tuesday, Nov. 6, 6:37 a.m. for style. As a writer, I wish I’d been more elegant. As a citizen, I realize elections – and countries – are about far more than single issues. As an individual, I love this country, I love my family and I hope to find myself celebrating the continued path forward for both this time tomorrow. Or sooner would be fine, too.)

An exercise in gratitude

One night last week, I found myself setting the alarm for 12:30 a.m., then 1:30, then 2:30, then 3:30, then 5:30 a.m. Nick’s blood sugar hovered in the 300s despite my continued dosages of insulin, refusing to drop into normal range until that last 5:30 check. Why does this tend to happen throughout the night instead of the day? I don’t know. I was too tired to ask, “Why?” at the time. I am often too tired to ask, “Why?” these days; I just want to figure out, “How?” How can I resolve his blood sugar problems? Why something isn’t working is only as relevant as how knowing the answer will help me fix it. I am a carpenter these days, not a philosopher.

(I wish I was a carpenter – what a lovely, practical skill to have.)

The following day I was, of course, exhausted. Sometimes rallying to face all that needs to be done between 6 a.m. and midnight challenges me more than I’d like to admit. In my daydreams, I waltz through the mornings, salsa through lunchtime, samba across the evening and tango into the night.

(I wish I knew all those dances – what an exquisite way to live.)

Reality finds me more often stumbling, tripping over my words and slumping at my desk. I confess, I felt a little sorry for myself. Life felt too heavy. I hadn’t even had a drink and still I just wanted to lie down on the nearest floor and say, “OK, I give.” But as always, in my stupid, brilliant, complicated, straightforward life, the good happenings continue to twist around the bad, impossible to separate or ignore. So even as I spend another night awake at 3:30 a.m. because I needed to check Nick’s blood sugar, which was high, again, and because while checking him, he complained that his pump kept beeping because the battery was low, so I had to go find a spare battery in the truck, where I keep some emergency supplies, and throughout all this, my poor old dog lies on the floor without getting up because her legs went out yesterday and she’s not getting past it despite my hopes that she might just be really, really worn out from walking to the beach, and now I am likely going to have to make the call to have a vet come out and end her life because that would be the right thing to do if she can’t walk (right?) and I’m really not ready for that because she’s so sweet and I didn’t pet her enough or walk her enough and fuck, I was trying to get to the counting-my-blessings part of this.

Right, blessings. Despite all the above and other, less tragic, bad news, in the last week, I’ve walked out from my house four times to watch the sun, all fiery orange and ringed with red, settle into the blue-black ocean. Each time, the fact that I can walk from my house to this experience stuns me as much as the gold glittering from the horizon to the sand as the sun balances on the edge of the world.

I am awed. And in this same span of time, I’m hiked out from my house twice to surf and once to play Frisbee with Bobby and Nick on an afternoon so clear, windless and balmy I’d longed to transport everyone I loved to the water’s edge so they, too, could bask in the beauty. We winged the Frisbee around like we’ve done a hundred times and I could see our lives together stretch back, stitched together by perfect moments like these. I remembered a similar afternoon years ago – seven? eight? – with Nick zipping across the low-tide shallows on a skimboard as Sandy galloped alongside.

I still have a job I love, one that pays enough to cover the bills and a little more, keeps my family in health benefits. I have at least a half-dozen people I believe I can tell anything to and will still be loved, despite sometimes saying and doing stupid things. I had lunch with one of these fabulous people, last Tuesday, sitting outside at Café Nooner, eating my favorite sandwich in the sunshine. I took two others surfing in Crescent City yesterday, the only place on the entire North Coast that wasn’t sunny, where the wind stayed onshore despite predictions of off-, and they graced me by being not only good sports about the weather, but genuinely having fun. Even with all the fighting my family does, I never feel unloved. My body holds up. My husband finds me beautiful. His garden bursts with flowers and veggies, the backyard a testament to his devotion. The calendar attests to good times to come.

I worry about the dog, about Nick, about our daughters. Please let Sandy not suffer. Please let the children be happy and healthy and outlive me. I make my to-do lists each day, hopeful that if I get everything checked off, life will proceed in the best possible way. I never quite get there. Some nights remain particularly long, some days still bring bad news. In the midst of it all, however, some joy bubbles up. Good things happen. Exhausted as I may be, I can never completely despair.

And for that, I am grateful.

I’m not the one with diabetes

I can’t write about what it’s like to have diabetes, but I can imagine it. More correctly, I can’t not imagine it. Usually at 3 a.m. when I climb up the stairs, turn on the light, shake him a little. “I have to check your blood sugar.” A hand, sleepily offered, often at a position awkward for the lancet device. Lately, I’m having trouble squeezing enough blood out. All the scar tissue, I think. So I pinch his finger harder than I’d like, grateful that at least he’s a teenager now, with teenager hands instead of little boy ones. If I don’t get enough blood the first time, I’ll have to start over and neither of us have the patience for that.

And then the number pops up high and I feel around for his pump, press the button to deliver the correcting dose of insulin and that’s when the despair flits through me. We’re so dependent on this technology, on the availability of insulin, of test strips, of needles and sets. I’m helpless. I think of how he might feel, having this device plugged into his body. I want him to be matter-of-fact about it, accepting and grateful that medicine has advanced so far, able to focus on all he can do — which is almost everything — and not weighed down by the burden. In the daylight hours, I hold on to the optimism. In the late night/early morning, sometimes it slips away from me.

I return to bed with the same thoughts I’ve had for the past five years.

I’m not doing enough. I should be more focused on knowing everything there is to know about Type 1 diabetes. I should be one of those moms who becomes a warrior for a cure. Maybe we’ve erred by trying to keep life as normal as possible, to treat the diabetes as just another important part of our whole big lives instead of the defining factor. What if all the mental weirdness of being a teenager overrules logical action? When does the mental weirdness of being a teenager not overrule logical action? How can we take care of him without taking too much care of him? Is there “too much” care of one’s child? Who will check his blood sugar at 3 a.m. when he’s off in the world?

And then I can’t breathe and I can’t think of anything else and I wonder that I can ever think of anything else and am sure the fact that I get through the days thinking of other things is a character flaw of the worst kind — and this is not about me. I’m not the one with diabetes. I just love someone who has it.

A little less worry: Healthcare affirmation

It’s not that it gets easier, sliding a fat needle under his skin, popping a lancet into his fingers at night and squeezing till the drop of blood grows large enough to measure. It just gets repetitious, and like anything, enough repetition will dull the senses. What is left to say? He holds still preparing for the set change, needs the house to quiet, everyone to keep from moving so he can focus on being ready for the pain. “Go,” he says and I push the tube-wrapped needle into his lower back at a slight angle.

Sometimes the movement is smooth, allowing me to quickly pull the needle back out, leaving the tubing in place. I secure it with adhesive and we’re done. Sometimes the needle catches, is too dull, I don’t know exactly. All I know is that sometimes it doesn’t go easily. He sucks in his breath. I wince, hating that it’s hurting him. That I’m hurting him.

At night, I tiptoe upstairs to check his blood sugar. I turn on the hall light, open his door, remove the meter and lancet device from his kit. The stupid lancet isn’t always sharp enough, which means I have to poke his finger repeatedly, hard and then pushing in hopes enough blood will come out. At midnight, I have little patience. At 3 a.m., I have none. I have to wake him for assistance. I am an inept vampire, unable to fulfill my simple task without help from my victim.

And after a bout of “good” numbers, we’re back to high high high. Is it because he’s not exercising enough? Because he’s growing? Because he’s not tracking his eating closely enough? Because he needs more insulin overall? I make suggestions. He rolls his eyes — he is a teenager, after all, and his mother is dumb and bothersome. But still, I keep talking. We can argue about whether or not his room should be cleaned, but this, his health and the possible long-term consequences of not combating the high blood sugars, this we must solve.

At least one concern has been put to rest for now: he’ll be able to keep getting medical care. That’s a significant relief in a world where reprieves from worry are hard to come by.

High and high again

So just when we’d sorted out the insulin doses to deal with the low nighttime blood sugars and had a couple really healthy weeks in a row, Nick’s blood sugar has been elevated for the past three days. First we thought the over-200 readings stemmed from a low reservoir. Or maybe he needed a set change. But neither helped. We tried shots. I set the alarm for 1 a.m., 3 a.m., 5 a.m. — so much for that dawn patrol I dreamed of, a distant second compared to this more immediate concern. The numbers stayed up. Over 200. Over 300. Over 200. A morning reading of 186 felt like success. I made eggs instead of pancakes, hoping the lack of carbs would translate into better blood sugar. Not sure what’s going on, but I do know this is all part of it, that diabetes is never really “figured out” so much as a certain amount of attention and luck will result in better numbers. Trying. Tired. But trying.

Mistake doesn’t begin to cover it

Last night I made a mistake that could’ve cost my son his life. He needed two shots of insulin, one the long-acting and one the short-acting. He’s on a pump most of the time, so shots have become a rarity, but that’s no excuse for the mistake I made. An excuse doesn’t exist — I don’t know what happened, how I messed up and gave him two shots of the Novolog instead of one Novolog and one Lantus. If I hadn’t realized my error almost immediately after, the heavy dose of short-acting insulin would have sent his blood sugar so low, so quickly, that we might not have been able to save him in time.

I think the insulin bottles were in the wrong boxes — perhaps moved around from taking extra supplies when we’ve traveled. I keep replaying it in my head. I shook out the bottle of Novolog, then pulled out the bottle of Lantus. Both bottles are clear, but the Novolog has an orange stripe and the Lantus a purple one. After sliding one needle into his arm and then the other, I returned to the fridge and realized I had both bottles of Novolog. My heart skipped as I made sense of what I’d just done. It wasn’t late. I wasn’t overly tired. All I can imagine is that I’d been distracted by all the million things I’m usually distracted by (work, dinner, bills, laundry, clutter, general worries) and that’s why I failed to notice what I thought was Lantus wasn’t.

To Nick’s credit, he remained calm. I dialed UCSF, filled in the answering service so they could page the doctor. While I waited for the call back, I poured Nick some orange juice, then some more orange juice. The amount of Novolog I fired into his body was enough insulin to cover 360 grams of carbs — the equivalent of 12 eight-ounce glasses of juice. Eighteen slices of bread. Three pints of Ben & Jerry’s. Way, way too many, in other words. I readied the glucagon, an emergency resource we’ve never had to use — I’ve dreaded the day I might have to save my son’s life by jabbing the fat needle into his muscle to prevent any insulin from taking effect. As we weighed options, the phone rang. The doctor. She talked me through what needed to happen, which, to my relief, did not include the glucagon — yet. The fact that his blood sugar had been high already helped, giving us more of a buffer zone than we would have had if he’d been in a “good” range.

But the next several hours were filled with finger pricks and more shots, granola with maple syrup and more orange juice. By 1:30 a.m., we finally hit the number we needed and could sleep without too much worry. Not that I could sleep. I had to hold it together because that’s what one has to do, but the fact that I could make such a potentially disastrous mistake had me in knots. I’m still shaking today.

5 things on my mind

I’m aching to write and also achingly tired. Here’s a list:

1. Chelsea’s birthday is tomorrow: 22!

2. Nick’s having a surgical procedure tomorrow. We have to be at St. Joe’s at 6 a.m. The surgery isn’t a major one, but he’ll be under anesthesia and also the diabetes factor complicates even minor operations. Since he has to fast, we need to ensure his blood sugar doesn’t drop into the low range – if it does, he’ll have to eat, which means the surgery can’t happen. But we don’t want his glucose level to be too high, especially since his A1C level was still elevated at his last doctor’s appointment. So I need to stay up late enough to make sure he’s in a good place, then get up early enough to get him to the hospital on time. I expect we’ll be there for hours.

3. I need to record a surf session. Only one, sadly, but a fun one, nonetheless. Thinking maybe I need to get myself up to Patrick’s Point soon. Am I brave enough?

4. A couple weeks ago, I ended up hiking through the dune forest and took a wrong fork. Given that I could see the power lines stretching north-south and glimpse the highway from time-to-time, I wasn’t exactly lost, but when the trail I was on ended and the sun was going down, I began to fear I wouldn’t get home before dark. Plus the trees are scary when they’re in the shadows. And it’s all Blair Witchy. And maybe a hobo tweeker might jump out at me. But, clearly, I survived.

5. Looking forward. Setting goals. Striving.

I just finished writing something for work about a new “No Discharge Zone” to help curb cruise ship pollution. Maybe I should consider creating a similar zone in which I will not spew my random thoughts. This here, though, this poor blog is stuck being a dumping ground.

insomnia #19 (which is a lot like insomnia #18… and insomnia #17… and… )

On the upside, Nick’s blood sugar is 118 – a perfect 3 a.m. number. So that’s good. On the downside, I can’t get back to sleep. The dog was twitching in her sleep, nails scraping on the floor. I finally rolled out from under the covers, unable to bear the sound, crouched down next to her. For a moment I worried she was having a seizure. She’s old. Maybe she was dying right in front of me. The beginnings of panic bloomed. “Sandy!” I whispered, rubbing her side. “Wake up!” After a moment, she lifted her head, gave me a groggy look, then rolled to her side for a belly rub. Her legs stopped spasming. She’d been chasing rabbits in her sleep after all, not running into the afterlife. (more…)

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