Tag: Chronic Illness

One Fine Day

Monday night we sent in Thing1’s enrollment fee to UMass Amherst. It was a huge moment but not just because he had finally decided which direction the next step in his future.

He had been back on steroids for a week to give his newest drug a chance to kick in. For four days his energy and resulting mood had been on the upswing. We stopped wondering if he’d need a medical deferral for school.

Thing1’s doctor has told us numerous times that Ulcerative Colitis is a permanent diagnosis, but it seemed as if the drugs and new diet were finally starting to control it. We bypassed hope and moved directly planning for the next few months.

Tuesday he took the last dose. After work we drove an hour to Clifton Park, NY to get a suit on sale for prom. As I drove, he talked about his plans for the prom at his school and the one at hers. A week earlier the long drive and fitting would have drained any energy and interest in conversation, let alone planning.

Wednesday was glorious. I used my day off to fax forms to schools and take care of car inspections. I listened to radio talk shows and reveled in the sunny first day that truly felt like spring. We closed out the day with burgers and silliness around the table at a local haunt. It was a celebration of normal.

It was a celebration of a new journey.

We got home while it was still light out. Thing1 claimed the coveted corner section of the sectional. I got out my laptop to follow up on a few issues at work. Thing2 channel surfed as he worked on his Star Wars fan video script. Chris stretched out on the other sofa for a well-deserved post-burger nap. Thing1 went to bed earlier than the night before. All of us chalked his exhaustion up to his busy day, refusing to entertain any possibility that the glorious string of days was an anomaly.

This morning when he came downstairs, his complexion was paler again. He silently made his diet-friendly breakfast and went to sit on the sectional. I hated the question I had to ask.

“Yes,” he answered. “One step forward, two steps back.”

“I’m sorry, Buddy,” I said, trying not to call a 6’3” gentle growing giant, ‘Baby’ as I’m often tempted to do when his mind or body is hurting.

Thing2 was almost ready for school, and I ducked into the mud room and angrily kicked off my slippers.

“I give up,” Thing1’s voice echoed around the corner. I wanted to swear at something on his behalf, but instead I slid into my clogs and yelled to Thing2 to get his shoes on.

I know parenthood doesn’t come with a finish line. It’s journey. You stay with it — sometimes a little slower — for as long as there’s breath and love in you. I keep wondering, though, if you get to a point where you automatically have a useful answer for the difficult moments.

“It’s a half step back,” was what I finally came up with. I don’t tell him everything’s going to be okay anymore. I know it will, but he’s been looking for real hope and not just flashes of it for a while now. Predicting a rosy future without knowing the solution isn’t optimism. It’s dismissive of his perspective which, while often hampered by youth, is his and which his experiences validates. “I’ll call DHMC,” I said.

Together we wondered if we needed to find a new strategy. Should we talk with our doctor(s) about alternatives such as Cannabis Oil that has been recommended by other people with UC? Should we try the next drug with a 40% success rate on the list? Thing1 finished his breakfast and got up to put his dishes in the sink where they will stay until Thing2 remembers to empty the dishwasher so discussion of staying up later on a school night can ensue.

The only strategy I could devise does not include swearing at the heavens or doctors or my life or Thing1’s. It does not allow giving into tears of frustration once I dropped off Thing2.

“I’ll call and keep calling, Buddy,” I told him, peeking around the mud room. “You call me if you start to spiral or need to come home during the day.” He nodded and started packing his bag for school.

As we have been reminded so often this winter, chronic disease, like life, is a journey. We’ve travel together for a while now. We do have our own paths, and there will be more time in our lives that we’ll navigate them independently than as a team. In these rough stretches, however, I’m sticking close. I making sure that he knows we’re working for answer and that, even with all the steps backwards, we won’t let him give up on the journey.

A Birthday Oddity


I honestly wanted to do nothing more than absolutely nothing yesterday. 

Yesterday, I woke up as a square.  An odd square.  A product of two odd primes. It’s the fourth time I’ve been the square of primes, and, in all probability the last, as I’ll have to be 121 to celebrate the next truly odd birthday.  For this birthday oddity I’d planned a trip to the University of New Hampshire for the last college visit before my first son has to figure out which dotted line he’ll sign. 

But that wasn’t what made it odd — or wonderful.

For the past two weeks Thing1 has been dealing with anemia brought on by his disease. He could not tolerate a drive of any length, so we had postponed the UNH visit already.  The newest drug, however, seemed to hit pause on his symptoms, and his affable nature had re-emerged over the last day or two. We knew this was the last best chance to go.

We got Thing2 to school and then headed down to the hospital. Thing1 needed bloodwork to check trough levels for one of the five drugs trying to control his auto-immune disorder.  It was already 9 by then, and Thing1 was ready for Breakfast Number 2 — a side effect and a sign he was starting to feel more himself. 

Treating the day like a field trip day (if it were run by an really over-indulgent teacher), I took him to our favorite diner in Bennington (my next blog will be titled ‘Diners I have Known’). We’ve been going there since Thing1 was in a car seat carrier, and my eyes started sweating as I watched my gentle giant pick out two entrees for a ‘snack’ (although it could have been tears brought on by the impending dent in my wallet). 

“Mom,” he said in that tone that said other people could see me getting emotional as my baby prepared to leave the nest.  There would be a few more warnings.

After breakfast we headed east toward the other side of Vermont and then to the east side of New Hampshire.  

We stopped for a break during the three and a half hour drive. A girl playing scratch tickets, reminded me of a failed lesson in probability from another road trip a decade ago.  On a whim, I bought a ticket, thinking he’d be my good luck charm again. Ten years ago, I’d told him we’d paid a tax on people who are bad at math and wound up winning on three $50 scratch tickets in a row. I’d chalked it up to some ‘magic’ which had everything to do with being with my seven-year-old and nothing to do with Math.  Yesterday I lost, of course.  Thing1 is too old and skeptical to channel that kind of magic anymore, but we were both laughing as I scraped the silver goo off the losing numbers. He’s still my good luck charm.

It had been a long time since I’ve heard Thing1 really laugh. 

We got UNH and asked our questions before walking around.  Thing1 loved it and was even more undecided about his future. A few more drives around the bucolic campus, we headed back to meet the Big Guy and Thing2 in Vermont for dinner. 

It poured most of the time until we got near the Vermont border.  It rained from Bellows Falls to Londonderry and got foggy as we headed over Bromley mountain to Manchester. 

My body was getting weary from the travel and from the constant travel and worry of the last few months. It was as if a day of not worrying — of seeing Thing1 happy and debating over pleasant aspects of his future —  had let my muscles relax too much for a moment. 

When we got the the restaurant, Thing1 mentioned a worrying symptom that had appeared, and we knew the tension release was temporary.  In reality it’s always temporary, but it is always welcome.  

When we got home, I got my sketchbook, planning to doodle and promptly passed out on the sofa with Thing1 next to me and eleven year old Thing2 draped over the cats that came to sit on my legs.  I woke up long enough to send Thing2 and myself to bed for the dreamless, satisfying sleep that only an exhaustingly perfect day can produce. 

And the oddest thing was that it was the best present I hadn’t even thought to ask for.

Not Depressed

The Big Guy has been fasting after lunch each day, so I text him early in the day to see if he wanted to break his fast to go to hibachi for dinner to celebrate two kids with honor roll and a full week of no hospital visits. He texted back ‘Zes’, in the mangled affirmative that had emerged with Thing1’s first words 16 years ago.

It was my last day off during the kids’ spring break (the term Spring is used very loosely in Vermont to describe a mythical concept based on the absence of snow). While the Big Guy got done with work, I played Monopoly with Thing2 so Thing1 could drive himself for the first time since his anemia was diagnosed and treated over a week ago to see SuperGal.

The morning felt normal, but normal doesn’t mean permanent.

I was still recovering from a bad property trade with Thing2 when Thing1 got home. He was pale and weak and complaining of pain that had all the hallmarks of a resurgent flare up. The Big Guy had arrived, and we debated staying home, but Thing1 insisted we carry on with our dinner plans.

“I have to eat,” he said. It was true, but his earlier excitement for a meal of celebration had devolved into determination to not surrender a favorite meal to his condition. The Big Guy and I voiced our concerns about his endurance, but he answered, “I just don’t care anymore.”

I have no doubt that’s true on a lot of recent days, and when he’s too tired to care, we know it’s our job to account for the deficit to get him through. As we packed everyone into the car and headed to the restaurant, however, in the rear-view mirror I could see his eyes close as he rested his head against the top of the door frame.

A worried crease appeared between his eyebrows, and I knew I was seeing a kid that is losing hope. I’ve seen that expression before. Usually I promise him we’ll keep searching until we find the right drug, but last night, as we drove, all I could do is promise him a delicious meal where we would all have fun.

We did have fun, and, for two hours it was a good drug.

When we got home, Thing1 had enough energy to crawl into bed. I went to the bottom of the stairs to his room several times during the night to make sure his breathing was normal, wishing I could give him my healthy organ.

It’s 6am as I write this, and we’ll head down to the hospital shortly for blood draws and more phone calls.

A lot of days I look for the silver lining. Thing1 has grown wise beyond his years. We have all gained empathy for people with long-term illnesses and appreciation for the privilege we enjoy in being able to seek out treatment option. This morning, however, I am focused on the lessons.

I’ve written a number of times about my own issues with mental illness and about the depression that invades life independent of any events, but what I’m feeling — what Thing1 has expressed he is feeling — is not that. There is an ongoing event.

This is not depression. This is understanding the new normal and its impact now and on the future. This is sadness. Last night, even when we were celebrating, it was grief.

There have been many times over the years when the only things keeping me from literally throwing away my life were Thing1 and Thing2. You can convince yourself that the adults in your life would survive and even thrive if you died, but no one can honestly tell themselves that a child would be better off with the knowledge that a mother willingly abandoned them.

So I’ve picked my battles with life, even when I didn’t really want to, and, even when life was awash with depression, it was worth it.

As I’m learning to understand the gulf between sadness and depression, I’m also learning that even if Thing1’s battle has to be fought indefinitely, I will fight it for him for as long he needs us to because he gives my life meaning.

So much is written about happiness these days. There are the happiest countries and the best paths to happiness. Life doesn’t have to be filled with happiness all the time to be worthwhile, however. As I’m slowly learning, filling it with meaning may be more sustaining in the long term.

Authentically Unconflicted

You’re It, Watercolor, 9×12 – SOLD

Prints can be purchased on Etsy here.

I started this blog about 6 years ago as an assignment for a writing workshop. It started as a way to share writing and drawings and evolved into a search for an authentic life that still continues.

I spend the majority of my time working at home. Most days, the only people I see are the Big Guy and 17-year-old Thing1 and 11-year-old Thing2. Our family conversations are hardly devoid of any meaning, but tend to focus on “what’s for dinner?“ and “can you pick up the kids?“

The only other regular conversation I have is with my blog. It has helped me deal honestly with bipolar disorder and embrace the dinner table stories that I once pooh-poohed. Over the years, however, that conversation has also led me to question if I was living in my truth and how to get to a place where I could.

One of the truths I discovered over the last few years is that I need to write and draw. When my life gets too congested to allow for a regular time for art, I have resented it.

Last fall, I reorganized my life to carve out time for creativity while building a new career that served the greater good. I started working weekends so I could go back to school, temporarily bowing out of a weekend writing class that had helped keep the spark lit for several years.

Murphy’s Law, however, is still in effect. My precise work schedule surrendered to the chaos of the holiday shopping season. And the bottom dropped out for Thing1.

Thing1 was diagnosed with an auto-immune disorder a year earlier. Despite promising early results with medication and severe diet changes, Thing1’s body began shutting down a few days after Christmas. It was barely a week into winter when, knowing which battle mattered most, I withdrew from classes.

Thing1 was hospitalized near the end of January for assessment and treatment. As he lay in recovery after a procedure, I struggled not to cry as his doctor told us that his illness was quite severe and laid out his options. Some required injections or infusions. All of them carried a risk of lymphoma, one of them fatal, especially in young men.

When we got him home, we focused on getting him back to ‘normal’ but quickly realized ‘normal’, like much in life, is an ever-moving goal post. We worked with the school to make sure he stayed on track. We worked with doctors to get him through flu season, keeping them on speed dial through nervous nights.

And, when time permitted and sanity demanded, I blogged.

I still get weepy at night in bed when everyone’s asleep or in the car when no one’s around, even though I know we’re incredibly lucky. Every time I pick up a prescription with an $800 copay that’s been covered by my insurance from work, I know we could also be sitting at our round kitchen table trying to find things to sell to pay for each drug or worrying about bankruptcy.

Long before this blog reignited my creative spark, Thing1 was teaching me patience and determination as I had never understood them before. The self-doubting, self-hating person I had once been before his birth was dissolved in the breast milk and tossed out with a meconium-filled diaper, leaving only Thing1’s mom who had happily reorganized her entire life around his needs.

So when my college sent out spring registration notifications, I knew I would not be signing up. I also knew I will be carving out creative time around my current career until I’m sure Thing1 can fully stand on his own and obtain his own sufficient insurance,

And that’s okay because there are two truths in my life. And, as Darth Vader once said to his offspring, “There is no conflict”. Not for me.

My truth is that creativity matters to me. My bigger truth and the key to living an authentic life for me is that without being true to Thing1 (and now Thing2), I don’t know that anything could keep that creative spark lit.

Smelling the Roses


“When are they due?” I texted, knowing exactly what the answer would be.

“Today,” he texted back.

I had tons of baby pictures, but we hadn’t snapped many pic of Thing1 or Thing2 since Christmas and none that were remotely yearbook-worthy. So that’s how the Big Guy, Thing1 & 2 and I found ourselves packed into my Jetta, zipping toward the mall portrait studio after I got done with work.

The ball-drop was my fault. I had messaged a friend about senior portraits a few weeks earlier and then forgotten about it when round 3 of this year’s flu started up. Thing2’s classroom has been a petrie dish that would make a bacteriologist green with envy and gangrene, repeatedly recycling flu and strep that caught Thing1 in an especially vicious spin of the cycle.

Thing1, understandably, has had to work to remind himself of the good things that have happened to him this year — getting into most of the schools he applied to, a job he loves with people he likes, and miraculously managing to be in the hospital mainly on days he’s not scheduled.

Still, he’s been out of school a lot. Normal bodily functions require planning. A fitness buff, he struggles to remember the healthy version of himself, and it has definitely affected his mental health.

“I just wish he’d get a break,” the Big Guy says every so often.

The entire family has learned that breaks are rare, brief and never scheduled. So, even though it was our first family outing in months that didn’t include a hospital, none of us was ready to let our guard down Saturday night as we sped toward the mall for the last minute appointment I’d booked.

The Big Guy, however, quickly started doing what dads do best, using his special talent for turning innocuous road signs into the finest eighth grade humor, and Thing1 and Thing2 were, as always, an appreciative audience. They segued into fart jokes, and we all started bawling. I focused on trying to drive as I surrendered any pretense of trying to minimize the inappropriate humor.

The shenanigans ceased only briefly as we walked through the department store to the portrait studio, but as soon as Thing1 and then Thing2 got in front of the camera, the Big Guy went to work with his Family Guy impressions ensuring that the two of them smiled for every shot.

They smiled for their individual sessions and then together with Thing2 putting Thing1 in a headlock or grinning up at him as if to say, “I’m willing to be the bratty brother the whole way home if it would get a laugh.”

And in every shot, I can see them completely forgetting their troubles. The only thought they seem to be sharing, as every kid does at least once, is how embarrassing parents can be in public.

Trouble started back up for Thing1 the next morning as his body refused to respond to medication and fart jokes.

We had known the fun would be short, but at least for a few hours on Saturday night, we had been reminded of an important truth which was the only unspoken thing that night. You have to take the bad, but when breaks come your way with a bit of good, you positively need to enjoy them — even if someone has to tell a fart joke to get you started — because you don’t know when they’ll come around again.

The Scattered States of Thing2

Thing2 at the ER

Thing1  was diagnosed with an autoimmune disorder almost 2 years ago now. We knew the diagnosis would come with big changes to his life, and this winter we really got to understand what it means to live with and care for someone with a chronic illness.

We were still somewhat prepared for it.

What we weren’t prepared for was going through very similar routine with Thing2. After several months of ER visits and tests and flu‘s, we now find ourselves between a number of diagnoses, including a possible tickborne illness.

 Thing2 has found himself and completely unfamiliar territory. My superhero whose used to jumping over tall rock piles in a single bound it’s only found himself with barely enough energy to walk from chair to bedroom.

Except during the worst of the pain, however, he still my superhero. I still see his enigmatic little smile, and he still finds ways to experiment, even if it’s only with making movies with special on the iPad (full disclosure: I could not do it) or testing theories about how your atoms are not really touching your brother that he heard on Cosmos (science hurts sometimes).

I would donate an organ if I could make him better tomorrow, by doing so, but, as Thing1 has Learned over last year, what doesn’t kill you doesn’t just make you stronger, it also makes you smarter.

Buried


“How are YOU doing,” they asked.

The right word escaped me then but has found me tonight as I listen to each inflection of Thing1’s fevered breath, afraid to sleep in case he spikes again, cataloging the drugs and doses he’s on incase we need to head to the hospital for the umpteenth time this snow-inundated winter, and feeling completely frustrated at not being able to do the one thing every mother is supposed to be able to do for her children — make them better. 
And, for the first time in weeks, mostly because I’m way beyond the “if i didn’t laugh I’d cry” stage of the winter and because I don’t have time to cry and can’t think to write or draw, I picked up a brush and started to paint, and the word found me.

Somehow we will dig out of this endless winter, but right now, I realized that the word I’d been looking for was “buried”, and it had nothing to do with the snow.

Breathing Room

At the beginning of this year, Thing1’s autoimmune disorder hospitalized him with an intense flare up and, not to be left out of the fun, promptly Thing2 contracted Influenza-A that, along with a lymph node inflammation painful enough to prompt two separate diagnoses of appendicitis earned him an overnight ticket to the pediatric ward. As a result, almost every week of our 2018 calendar has been dotted with nights in the ER, overnights at the hospital and follow-ups at various doctor’s offices. Last Thursday marked my first day off in weeks that didn’t include a rush to the ER or a four hour round trip drive across the state to a specialist, and I didn’t know what to make of the unexpected breathing room.

For weeks, the voices in my head that run an internal dialogue about art and literature and school shootings and the homeless population and, you name it have been replaced with instructions. Log when you last gave Tylenol or ibuprofen. Call for the new prescriptions. Did T1 have 32 ounces of water or 16? When did T2 poop? Check his weight. Call the insurance company. Call the doctor. Call the insurance company. I wasn’t numb, but I was a robot. Calculating but not thinking, especially if it meant engaging in worry which is all too natural for me (it could be an Olympic sport).

The robot didn’t have much extra processing power for art or writing, and February was burning away without any pictures to show for it. Even a conversation with a fellow artist about drawing in the down times at waiting rooms didn’t get my pencil or brush moving.

There was breathing room, but for some reason, I was afraid to rake that first breath.

A few nights ago, I decided out the iPad to work on a page for Dweezil’s To-Dos, a book about a little boy with too many projects (don’t ask how I get my inspiration).

Inking and coloring over the scanned drawings is methodical. Robotic. It’s not particularly creative a lot of the time. It’s basically just drawing lines – filling in the space between points.

It’s not creative, but it is meditative.

In the meditation, however, the robot slowed down. I inked and colored page 6 six different ways, and the machine started to power down. My eyelids felt heavy, and the iPad fell from my hand. The thud of the Otterbox on the floor jolted me awake again, and, rebooting, I took in a gulp of air and opened a file to start page 7.

A Room with a View


Thing1 and I spent most of the day at Dartmouth- Hitchcock looking out the window of his room toward the great foggy north known as New Hampshire. The mountains disappeared and re-emerged from the clouds that has to around us all day, and they set the perfect view for our mood.
Thing1’s Ulcerative Colitis required him to be admitted to the hospital for treatment of a severe acute episode last night. The disease has escalated, and when we leave tomorrow, it will be with the knowledge that we need to decide between several long-term treatment options, each of which carry serious risks.

My gentle giant hasn’t shed any tears or wallowed in self-pity since his diagnosis a year and a half ago, but I could tell that the relapse and the treatment options presented had deflated his morale quite a bit. 

 Pep talks and platitudes are wasted on Thing1, so I steered the conversation back to his favorite topic – cars – until he was ready to talk about options. I worked my online day job while nurses came in and out with more medications and fluids, and the gray foggy day seemed to flow through the plate glass window.

Late in the day, the sound of a snow plow in the parking lot 5 floors below pulled our attention back to our view.

“The mountains are too populated,” said T1, “but they are beautiful.”

When the mountains disappeared into the night, I was able to do my own research into T1’s options. Number crunching and phone calls to experts made us more optimistic, and a chance conversation with a nurse with the same disease helped T1 marshal his morale.  

Tomorrow is supposed to be cold but sunny, and the view should get better as things become clearer.

A Straw to Grasp

High Afternoon, 5×7, Watercolor

We had stayed over night near Dartmouth-Hitchcock hospital for medical and weather-related reasons, and the roads to the highway were still icey enough to keep me from enjoying the views, so Thing1 and I talked about his auto-immune disorder and how he will handle these emergencies next year when he’s on his own and about his upcoming college decisions.
I was about to take a slower road but Thing1 gave an annoyed snort.

“Can’t we take 91?  If we get back any later, I’ll  miss work, and I already missed my midterm.”

I was a bit surprised that he would want to work when I knew he was feeling shaky but decided we’d have that argument when we got home. He was not about to let it go, however, and, after expressing an unwillingness to ruin a perfect attendance record at work for weather or illness, he talked me into letting him go. 

 I got on the next ramp for 91 South. I was not sure that he had the energy, but still I told him, “I could not be prouder of you if you had gotten into Harvard.”

“I didn’t apply to Harvard, Mom.” 

The  sardonic tone always gets my eyes to roll to the heavens which is how I was unexpectedly fully able to take in the winter fantasy that flanked us on both sides of the highway.  After the last week of worry, it was almost as lovely a happy straw to grasp as the realization that my sick boy still had enough energy and sense of humor to be a smart ass (I don’t know where he gets it).