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Chronic Illness

Yes, at the Dinner Table

Denial isn’t a river in Egypt. It’s a pitcher of Kool-Aid, and as the heatwave wore on into its fifth day on Thursday, Thing1 and I were sporting faint purple mustaches, reality about to crash through the walls — again.

 

Heat advisories all week had included warnings for people with chronic illness. The advisories didn’t specify what care the chronically ill should take beyond staying out of the heat. Thing1 and I, however, still mentally had him in the ‘warning doesn’t apply here’ category, and, when Thing2 suggested going to the driving range, I got my keys.

 

It was 92 degrees by the time we put our money in the honor box in the barn that doubled as a pro shop and plant nursery. Thing2 and I were happy to make contact with the ball. For Thing1, every shot matters. He’ll hit one 200 yard ball for every three his eleven-year-old brother knocks into the ruff. Thursday Thing2 swung his way through half the basket before Thing1 had teed off four times.

 

“I need to sit down in the shade.” Thing1 grabbed his water and headed down the small hill to the car. He sat on the shady side, hand resting on the open door, sipping and breathing slowly.

 

“Do you want to go?” I asked, ready to put my foot down and force an exit. Thing1’s illness, however, has kept him indoors most of the summer. I wanted him to enjoy a normal day out.

 

He shook his head ‘no’, waited a few more minutes, and trudged back up the hill for a few more shots. We quickly realized practice was over for him, and he went back to the car for a minute while Thing2 hit the rest of the bucket. We headed home thinking Thing1 only needed a dip in the Green River and some rest to be better for work the next day.

 

Friday morning, Thing1 woke up with a fever and a phone call from the hospital telling us that his latest blood test showed his anemia — a side effect of the ongoing six month flare up — was worse. Neither of us was surprised. His lips had no color. His energy level, briefly improved in June, was almost non-existent again. He didn’t work Friday and stayed in bed all Saturday, determined to go to work today.

 

This morning he woke early and got breakfast. He headed out for his shift, and I took another mental sip of Kool Aid hoping he was over the worst.

 

<<I’m coming home.>> It was three hours into his four hour shift when the text came. <<If I stay any longer I won’t be able to drive.>>

 

We texted back and forth, arguing if should be driven. He was already on the way home by the time he managed to text enough teen tone to convince me of his alertness. He spent the rest of the day on the couch, hydrating to control a new fever, once wondering aloud if his body will ever let him out of limbo. Thing2 waited on him, bringing him water while I worked.

 

When work was done, the Big Guy and I sat on the deck as he grilled burgers for dinner. We talked about the fragility of Thing1’s plans for school in the fall and beyond. The wall of reality was crashing in.

 

Thing1 used his last bit of energy for the day moving from the couch to the table. He looked at the burgers.

 

“I’m not really hungry,” he said. “It smells great. I know I need it, I just don’t have have any desire for it.”

 

Thing2 had spent the day monitoring his brother in an unnatural state of quiet and was bubbling with energy as the Big Guy served the burgers. He waltzed to his seat, a speaker-connected iPad in his hands and a devilish grin on his face. He tapped the screen and a loud fart emanated from the speaker. He tapped again and a Beavis and Butthead laugh echoed into the surrounding forest.

 

Tap, fart. Tap, goat laugh. Tap bark causing the pets to look in our direction andThing1 to smile and then quietly chuckle.

 

“All that science and technology for a fart joke,” Thing1 murmured. Then he grinned at me and the Big Guy and reached for a burger. Thing2, never one to let an audience down, serenaded his older brother with more creative fart sounds as he ate until, as happens with all great jokes, the farts grew stale. But the farts and the technology had served a higher purpose.

 

It’s still early evening. Thing1 is already in bed as I write this. We have a visit to the hospital this week, and I’m pretty sure both of us are no longer drinking the Kool Aid. Thing1 is in the ‘really chronically ill, better heed the warnings category. He’s in the ‘no idea what his plans are past tomorrow category’. We’re off the sugar high of denial, but just because the walls fell in, doesn’t mean we’ve fallen down.

 

One of my favorite books growing up was Alice Walker’s Possessing the Secret of Joy which traces the voluntary circumcision of Tashi, an African woman trying to mediate her gender and and cultural identity. Through her physical and emotional recovery in the aftermath of the mutilation, she discovers and reveals to the reader that “resistance is the secret of joy.” I’ve never wanted or been able to forget the story and the beauty of Walker’s writing, but that missive burned itself into my subconscious. It resurfaces in chaotic times, it is guidance.

 

Since Thing1’s illness intensified this year, my resistance has been finding the right drug, the right strategy to get him well enough to start his adult life. As squeaky gassy sounds from the iPad surround us at the dinner table, however, it becomes clear that resistance is not about finding the solution to every problem. It’s about recognizing that some problems won’t be solved, but life will go on, and, if you’re willing to seize it, joy — however dinner table inappropriate — happens anyway.

The Living is Living

Thing 1
Thing1 Keeping his Eyes on the Future

Summer camp hasn’t started yet, so the boys are enjoying the fully unscheduled portion of summer. They go to bed, mostly, when they want. They get up when they’re done sleeping, lately, only time to binge watch Avengers movies together until friends call or dinner time.

This morning Thing2 was finishing up the umpteenth viewing of Spiderman – Yet Another Spider-Man Origins Movie and getting ready to move onto The Unknown Hero – A Filler Episode About A Guy we just made up but that You Need Your Parents to Buy If You Want to Understand All The Sequels when I realized I hadn’t heard the gentle sounds of found two boys not arguing all morning. I checked the clock and realize it was lunchtime.

Thing1 is normally very good about getting himself out of bed early enough in the morning to make sure he gets enough food to get his medication. At ten I had texted him it was time to get up. I saw the text was delivered, but by noon, it still hadn’t been read, and I knew today he needed a push.

I called up the stairs to his bedroom but got no answer and climbed up as quietly as possible. When I got to the top, he was curled up on his side, and, knowing he usually favors sleeping on his back, I got nervous. I called him again and still got no answer. Resisting the urge to channel my inner all Shirley MacLaine in Terms of Endearment, slapping my kid awake to be sure he hadn’t croaked in the 4 hours since I’d first called to him, I went over and gave him a gentle nudge on the shoulder. He didn’t answer, and I called again.

I knew he wasn’t dead. Very few people die from his disease. I did know his medications have been as reliable as my first Pinto, and if his flare up was turning into a scorcher, we might need to take a drive down to the ER to treat the acute symptoms until the pharmaceuticals and cannabis oil could regroup in his intestines.

Six months into his flare up, and Thing1 has learned that he’ll never not notice it. What’s changed over the last six months,though, is how quickly we let it derail a day or a life. Without being sanguine about the need to address and treat symptoms and stay in touch with doctors, we’ve also learned when to race to the ER and when it’s okay to wait for a call from the doctor. We’ve learned to distinguish the signs of a little more inflammation merely exhausting him into extra naps for the days and when the disease is firebombing his insides until he’s on the road to anemia again.

Most mornings, my main concern is that he gets good about getting himself out of bed before he moves out in the fall. We’re still making plans for fall, not always sure if we’re being determined or a little foolhardy. The reality, however, is that anything could happen between now and September, even things that have nothing to do with a chronic illness. Those things could help him on his way or completely derail him, but until those possibilities become realities, we keep plotting the points on his journey through the summer and into his future.

What Kind of Mother

It’s two day before Thing1’s graduation. I’m on hold with the pharmacy for the third time this week trying to find out what’s happened with the most expensive of his five prescriptions. The insurance company won’t approve an increased dosage.

I’m scrolling through Facebook while I wait, stopping to like a friend’s post about a daughter’s scholarships or add a frowny-face to a post about a shelter dog on ‘death row’. I’m thinking about Plan B and C, including a three hour drive to Montreal to buy the temperature-controlled drug there. 

The hold music is still playing as I pause at a picture of a crying toddler. I click on it and open the article.

The boy in the article has been recently separated from his immigrant mother. The article doesn’t mention if they entered the US illegally or were seeking asylum, only that he is traumatized and that his mother is now incarcerated several states away. I break a strict self-imposed rule and scroll to the comments below the article. There is outrage at the child’s situation. There is also indifference and even smug vitriol cast at the mother and, by extension at the child on whom our government is visiting this psychological trauma, for his mother’s ‘sin’, a misdemeanor at worst, of crossing the border.

The pharmacy customer service rep returns and pulls me back to my current battle, which suddenly seems almost insignificant. I harden my heart and head and click the back button, for now forgetting the child and the hundreds like him.

“I’m sorry, Ma’am,” she says, her voice almost robotic. “The insurance company has denied the claim again.”

“Well can you at least send out the original prescription?” I ask. “He’s getting way behind now.”

“I’m sorry, Ma’am,” she says again. “The old one was canceled with the new one. We’ve sent it back to the hospital to reauthorize.” 

I want to ask her if she worries about job security if medical marijuana – a derivative of which we are on now wholly dependent to stop my firstborn’s internal bleeding – ever gains real traction. Instead I thank her for nothing, knowing I’m being rude for no good reason and with no expectation of an improved result. I call the hospital as soon as I hang up. 

The nurses – there’s a special place in heaven for them – are already faxing and calling and liasoning between the doctors and the ‘experts’ at the insurance company (there’s a special place for them too). The nurses inform me that the insurance company’s chief pharmacist denied the new dose again, and they are appealing the denial a second time.

By Friday afternoon, company is due to arrive for Thing1’s graduation. I finish most of the cleaning and sit down to call the hospital before the weekend starts. I sit on hold, thumbing through the Facebook feed on my phone again, smiling in spite of my frustration. Images of kids smiling at parties and beaming parents flood my feed. I know they have their worries too, but, for a moment, I feel like I’m looking through a window at another world.

Stories of children being separated from parents also appear. I don’t click on the articles; I’ve just heard their stories on the radio. A father, separated from his young son, has killed himself. Mothers in detention are being told they may never see their children again. Today, knowing I can do nothing, I choose to be blind.

The nurse picks up and tells me the insurance company is still stalling. My son is now over a week behind on the main medication he needs to know will work before he makes too many plans for fall. 

Saturday I tune out, focusing only on our small family celebration. At noon, our firstborn, my baby crosses the great divide from high school to a world that expects something of him. It is a huge step, and I constantly think how fortunate we are to have been able to travel toward and cross over that divide with him. Now, increasingly, he will travel independently. 

Once, I thought this part of the journey would be like ripping a band-aid off of an unshaved leg. 

Before Thing1 was born, I did not want kids. I was a wretched sinner. I had fornicated. I had lied — to people I hated, people I loved, to myself constantly. I had been guilty of almost every deadly sin. I was selfish. I was the worst candidate for a potential parent.

Somehow the miracle of my son happened. It would trite to say that he saved me, and he didn’t. He instead brought out a best part of me that I didn’t know existed so that I could be there to save him if the need ever arose.  

When he was first born, in my dreams, the need always arose. Shortly before I went back to work my dreams became colorful scenarios of someone pointing to my past sins. A judgmental family member or actual judge would tear him from my unfit arms, a rhythmic, colicky cry providing the nightmare’s soundtrack.

Initially, I thought these dreams were more selfishness — the fear of losing the one good thing I had ever been a part of making. Eventually, I began to see my anxieties about losing my child were really about the fear that my earlier sins, in the form of karma, delayed ‘justice’, or just incompetent mothering might threaten his foundation, that the sins of his mother would be visited on him.

Tuesday is Thing2’s last day of school. Our older son’s case is still under appeal. The three of us decide to go to lunch rather than wait by the phone. It’s a perfect Vermont summer day until we get back to the mailbox where we discover the first denial letters, signed by the insurance company’s chief pharmacy officer. 

I call the hospital for a status report. As I wait on hold, I google the pharmacy officer, a woman I discover. Knowing it’s psychotic, I get on Facebook, stalking the woman who’s denied my child’s prescription. I find her profile easily, discovering a professional portrait and a few snapshots of her with a little girl, maybe her daughter. 

I want to message her, to ask her what kind of mother can look at my seventeen-year-old’s charts and deny his chance at health. How can she be so blind to his condition?

The nurse returns and informs me that the doctors have conferred with the insurer for yet another review. We’ll know more Wednesday morning. 

Wednesday after lunch I start my daily calls. Our son is anxious to go back to work. Three weeks without his medication, however, are causing a backslide, despite the cannabis oil on which we’ve pinned too much hope.  

But I still have hope. I have a Plan B and C through Z if needed, and Thing1 knows it. That knowledge is letting both of us see his future through an optimistic lens. 

I keep Facebook open for a few more minutes after I hang up the phone. Graduation photos still appear in the feed. So do more articles about children being torn from their families in the name of national security. 

I click on a few, avoiding the comments, focusing on the families, on the children. I mull over a new Plan A, then Plan B to help safeguard those futures. They are not my children anymore than my son is the pharmacy officer’s child, but they are someone’s children. I still don’t know exactly how to help, anymore than I know if we’ll win our second appeal, but today, as I wait, I refuse to be blind.

Summer Breaks


It’s the week before graduation. Thing1 and the Big Guy are working together to disassemble a third-hand swing set that has become too tired and worn to allow even the cats to play on. The swing set arrived at the house when we did, when Thing1 was in first grade and Thing2 was on the way. This weekend, both boys are too big to use it, and watching the Big Guy and Thing1 work together as equals to take it apart and clean up the rest of the yard for next weekend is making my eyes sweaty.

Thing1’s on weekly Humira now. The levels still aren’t high enough to make a difference, and he’s using cannabis oil to handle the inflammation. I get to make the odd joke about being mom of the year for getting my kid to use pot (it’s not, it’s hemp), but it is working to a degree. He’s weaning off of Prednisone which isn’t working, still taking Lialda, which isn’t working and waiting for the next blood test to see if we’ll stick with Humira or move on to the next trial-and-error.

And he’s waiting for his life to begin.

Except a funny thing has happened in the last few weeks. In between the phone calls and the daily inquiries into his bowel movements, he’s managed to get to alumni dinners for this year’s grads. He’s helped plan and pull off a senior prank centered around screwing up a parking lot for a day. He’s scheduled a new student orientation day for college.

We don’t know if he’ll be going to college in the fall. We don’t know what his future holds. The reality is, however, even if he weren’t sick, we wouldn’t know that.

Next week his grandparents and aunt will come to see him graduate. We’ll have a small party at home with a burger bar, music and a slide show of the most embarrassing moments of his first 1.78 decades.

It’s been hot the last few days. We all laugh as we realize the snow tires just came off a week or two ago. It’s springing into summer, and, just as quickly, Thing1 will be into his ‘real’ life. He’ll take his Ulcerative Colitis with him. We’ll help him fight for as much as we can for as long as we can, but, in the long run, the bulk of the battle will be his.

Hopefully he’s heading into a long summer, but the nature of his disease is that he will see winter again. Some winters are easy. Others throw a Nor-easter at you every week until you think you’ll throw in the shovel and let the winter bury you. This winter, he learned how to dig.

Because he also learned that, for the people who can and will dig, the winter does end. It always ends.

Curating Memory

Between skipping dinners at fancy restaurants and driving themselves rather than the limos featured in every movie about proms in ‘middle class’ America, Thing1’s and SuperGal/SeriousGirlfriend’s prom expenses hover far below the $1000+ average we hear about on the news.

Even the least expensive tux rental, however is a budget buster for us. Last year Thing 1 was tall and broad enough that we altered his dad’s tux down to fit him. This year he’s 60 pounds lighter but still has his prom and hers to go to.

I finally break down and buy him a suit that can go to prom and beyond, but it isn’t just about the money.

The two of them haven’t seen each other much this winter. She was under the weather in April. He’s been trying to have a complete week of school since two days after Christmas. The last week or two, we’ve juggled his medications a few more times. Tonight he has enough energy to drive the two of them in our 20-year-old Volvo wagon.

Her mom and I are feeling unusually normal. We snap as many pictures as we can fit in our phone and camera. The kids smile at us and each other the entire time, exchanging tolerant glances as their moms and dads laugh and cry and wonder aloud where the time went.

SuperGal playfully pretend-jabs Thing1 in the chest when he makes a joke intended to provoke the females.

“Careful,” he laughs. “That’s near my bleeding intestine.”

My antennae go up.

“I thought we were done with this,” I want to say.

He was done with this morning. Now, apparently, it’s back.

I don’t go to bed early on any prom night. Until the key turns in the door, I’ll be mentally replaying every news story of every kid that’s been in a prom-related car accident (even though I’ve been comparatively calm when he drives to work at night through most of the Nor-Easters we had this winter).

This prom night when he walks in the door, I’ll ask him if they had fun. Who did they see? Was the music good? Did you have snacks?

The question that has to come, that has become part of our new normal, will have to wait until morning. Whatever the answer will be, it will not become part of his memory of this night.

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