Taking care of a kid with a chronic illness

I keep telling myself, “at least it’s not cancer”, “at least she’s not waiting on a heart transplant”, “Thank God she doesn’t have cerebral palsy”. There are lots of worse things than what we are going through and I know that. But my nine-year-old has some autoimmune stuff happening, some of which we’ve known about for a while, and some of which is new.

A little history: she’s been in a diabetes study since she was born. She has the gene for Type 1 (as I’m sure I do as my grandpa and uncle both had/have diabetes Type 1). The day after I gave birth to C., when we were still in the hospital, a guy named Michael showed up in our room and asked if he could test her for the gene. There was a big international study called TEDDY (The Environmental Determinants for Diabetes in the Young), he told us. I hesitated, but J. thought we should do it. Knowledge is power and all that.

What followed has been almost a decade of poop samples, twice yearly blood draws, toenail clippings, diet records, water samples, questionnaires and in-person appointments here in Seattle. We are trying to help science figure out why some people with the Type 1 gene go on to develop diabetes and why some don’t. In return, we get a letter every six months that gives me a heart attack each time I see the envelope. So far, it has always told us that C.’s blood test was negative for diabetes antibodies. I often wonder how I’ll feel if the letter someday says otherwise.

When C. was 4, someone from the study called to tell me that she’d tested positive for Celiac disease. They test for Celiac because it is somehow related to diabetes. I don’t totally get the correlation, but there is one. I was stunned (though also a little relieved because I thought I’d gotten a call to say C. was developing diabetes).

My son, her brother, already has severe food allergies (though, of course, none of them are to wheat). So, when we got the celiac call I thought, okay, I’ve got this. I can do food avoidance. We can adjust.

We had her scoped, and her scope was completely clean. No gluten damage at all. Our GI doc at Seattle Children’s Hospital told us she could keep eating wheat. For the next four years, I fed her macaroni and cheese, chicken nuggets, graham crackers, all the usual gross-but-demanded kid foods.

One night, the summer she was 8 (2013), she had horrible abdominal pain. She writhed in discomfort and couldn’t sleep. Around midnight, I decided to take her to the ER. I was afraid she had appendicitis and we weren’t sleeping anyway. What they found after doing an x-ray was a whole lot of constipation. We were instructed to give her Miralax and sent on our way.

Around that time, she was wearing her hair almost exclusively in a ponytail and I started noticing a large lump around the base of her throat. I knew right away it was a goiter, even though goiters sound like something old men in assisted living facilities get. Not something a little girl would have.

After a quick Google search, I satisfied myself that a kid’s goiter didn’t mean anything. That it would likely go away on its own.

That fall, C. had her 8-and-a-half-year Teddy appointment. Our clinician, who I love, thought we needed to make some changes to C.’s diet so she wouldn’t be so constipated or have so many stomach aches. They convinced us it was time for C. to go gluten free.

We went full bore GF. I made an appointment with a different pediatric GI doc at another hospital who did some blood work and confirmed the celiac diagnosis.

That particular doctor also got us in to see an endocrinologist about C.’s goiter. Very quickly, he did a blood test and ultrasound and diagnosed her with Hashimoto’s thyroiditis, a hypo-thyroid condition that often goes hand-in-hand with Celiac.

Fortunately, or unfortunately, though C. has antibodies attacking her thyroid, her thyroid levels are normal, so doctors won’t treat her. Probably don’t know how to treat her.

But she is sick. Despite being gluten free for more than a year (and, yes, I am very careful about hidden gluten and cross-contamination), she is nauseated every day. Stomach acid floods her esophagus and throat. She is starting to miss an alarming amount of school.

We have been to a naturopath since last February who has prescribed lots of supplements and tests, none of which have conclusively helped or diagnosed anything beyond a Vitamin D deficiency, which I’m treating. For the past two months, C. has been going to a Chinese acupuncturist/herbalist. Yet, nothing. It’s not helping.

in December, we decided to do one more endoscopy to rule out ulcers or anything more ominous. It was clean. Clean and pink as a nine-year-old’s digestive tract should be. We could even see villi. The GI doc gave the go ahead for C. to eat dairy, which we’d been avoiding in the hopes of helping her nausea.

She doesn’t want to eat the dairy, her digestive tract is beautiful, she ingests no gluten, her TSH levels are normal, but she still feels like shit. And I don’t know how to help her. Lately I’ve been reading up on low stomach acid and the symptoms fit her perfectly. We are trying some more supplements, apple cider vinegar, raw honey.

Her most recent GI doctor diagnosed her with autonomic dysfunction, which matches up with her symptoms to an extent, though she doesn’t have much of the dizziness, rapid heartbeat, etc. associated with that particular malady. And, as the doctor says, there is no real treatment for AD. He recommended peppermint, ginger, and mindfulness. We’re trying all that. With no results.

Since I titled this post ‘taking care of a kid with a chronic illness’, I need to tell you what it’s like. It is emotional and heartbreaking. I know C. has had a lot of good moments in the past year-and-a-half, but I also feel like she’s lost so much time to feeling sick. I’ve given her permission to tell me whenever she feels yucky, if it helps even a little to vent. Consequently, she tells me she is queasy about 100 times a day. Every time she announces this I want to cry. She looks at me with her round eyes, miserable, and imploring for help, but I don’t know what to do. I don’t know what else to fucking do.

It seems like, and C. says, that things are getting worse rather than better. She used to have more reprieves at least in the middle of the day, but now she is sick the whole way through. I feel lost and hopeless sometimes, but can’t tell her that. I act positive and convince her that we will figure this out and she will feel good again some day. Hopefully soon. But I don’t know if I believe it. I want to because I can’t accept that, even with the celiac, Hashimoto’s, and possible autonomic dysfunction, that she has to live the rest of her childhood or life feeling crappy.

So, we keep trying things. She keeps telling me she’s “queasy”, that her throat hurts from the acid, that she feels like she is going to throw up, that she doesn’t want to go on sleepovers and playdates because of her nausea. And after she falls asleep (late, always so late) I drink and cry and do more Googling to try to figure out what the hell is wrong with my baby.

I’m sorry if this is poorly written. I need to hit Publish. To get this out there.

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My scratch disk is almost full

My mind is pretty close to blown. My ear drums are about to burst. My loneliness is pulling me in. My need for space eclipses all else.

Hello

I am still here. Are you?

I know this is corny…but…

we went sledding up on the mountains last Sunday. We try to do this once a year so the kids can actually experience the white stuff. And as we were up there, Max caught a snowflake on his glove and gasped, “I can see all the points on the snowflake! I can see all the points!”

It was one of those moments, you know. Where you’re watching this person you brought into the world realizing how fantastic the world can be.

Dead for five minutes (#3)

Yeah, so, I don’t know if this is what should come next or not. But it’s what I wrote for now.

It was a Sunday and, for something different to do, something besides feeding the kids and watching mind-numbing Nick Jr. while counting down the hours until nap time, they’d attempted a hike– a trek up a hillside east of Seattle with one-year-old sobbing Ella in the pack on Justin’s back and Jack dragging a stick and complaining all the way up the shady trail lined with ferns and looming evergreens.

Fog hung thick all around them. Besides a few skittering chipmunks, there was no wildlife to be seen. Far off traffic whooshed from Highway 90, but they could almost convince themselves it was a waterfall they hadn’t yet reached.

“Maybe we should cut our losses and head back home,” Jen said, stopping and resting her hands on her hips. She felt defeated. The kids were just too young to do stuff like this. In another couple years possibly, but as of now hiking and kayaking and even going to friend’s houses for dinner was impossible. The collecting of snacks and water bottles and diapers and wipes and pacifiers and changes of clothes and DVDs for the car only to have the kids fall apart upon arrival wasn’t worth it.

Ella, momentarily quiet, looked at her through wet eyes and Jack whacked the ground with his stick. “Yeah! Go home!”

Justin crouched, looked Jack in the eye like the parenting books instructed, and said, “Why do you want to leave? What would we do at home that we can’t do here?”

“Play penguins!” Jack yelled. It was his video game du jour.

Justin stood up again, his legs and neck staining under the weight of Ella, palm scrubbed his face and said, “Great. Screens.”

Ella screamed like a baby owl that’d been stuck in a Ball jar.

Striding to her, Jen said, “Let’s get her out of that contraption.” She started unbuckling the harness holding her daughter’s small torso into the backpack, but Justin whipped around. “No. We’re doing this. We need outdoor family time.”

“It’s not working, Jus,” she said. “You can hike with your friends, okay, but we can’t do this yet. The kids aren’t ready. They’re not appreciating any of it and, frankly, it’s too hard to be fun for me.”

Jen loved her children, at moments too much, but times like this she wished she could will them gone. Not dead. Not never born. Perhaps tucked perpetually into comfy beds, dreaming sweet dreams with half smiles on their faces.

She loved Justin, too, almost never too much. He couldn’t give up, though, even when pressing on became unreasonable. Once he had flown to D.C. for work, as he did a couple times a month, with a flu so terrible that he’d passed out on the boarding ramp at Dulles, causing medics to flood the narrow space and rush him to George Washington Hospital. She’d begged him to stay home that time, but he’d only clenched his jaw and packed the rolling duffel she’d gotten him for Christmas

“So it’s just raise the white flag then? Peace out, never mind that we drove almost an hour to get here,” he slipped a bottle of water from the holder at his hip and swigged.

“This time, yes.” If all had gone as planned, they would’ve been almost back to the trailhead by now, but a last minute Jack tantrum and emergency change of Ella’s diaper put them behind. She could tell both kids badly needed their naps.

“We’re almost halfway. If we just keep going we’ll be back to the car in forty-five minutes.”

“We won’t, though, because the trail gains 300 feet. C’mon, Jus. The kids are done.”

“Humor me,” he said.

Jen groaned. It had come down to choosing between the kids’ whining or her husband sulking for the rest of the hike so she said, “Okay, fine. You lead the way.”

He smiled at her, the kind of smile that, if she were in the mood, would make her feel polished and new.

Up they continued, through the mist. Jen tried to make up a game with Jack that hulking rocks were really outlines of bands of gorillas, but he just chanted, “Penguins! Penguins!” until she gave him an emergency Tootsie pop she had stashed in the pack.

By the time they made it back to the Subaru, she had to focus hard on getting the kids strapped into their car seats to keep from shooting splenetic looks at Justin.

He, however, was acting victorious – grinning and fist bumping Jack. They made it. Their first family hike since Ella was born.

“Hopefully they’ll sleep on the way home,” she muttered, slamming her door and kicking off her tennis shoes. 

“Hey,” Justin said, turning the key and beaming at her as if he’d just convinced Rand Beers to give Paraline another few million dollars. “We’ve got this parenting thing down.”

He leaned across the gear shift for a kiss and, in spite of her crappy mood, Jen twisted toward him. He smelled like sweat and the shampoo he’d used that morning and tiny bit like Ella’s spit up.

In that moment, her irritation evaporated in a burst of comfort and familiarity, Here was the man she’d been with for almost nine years, who’d proposed to her at an Inn on Orcas Island, who’d held her hand and whispered in her ear how strong she was as she pushed Jack and then Ella into the world, who could whip up a stupendous frittata in fifteen minutes on a busy weeknight. The man who, many days and certainly at that exact point in time, she was still in love with.

Dead for 5 minutes

The milk frother shrieks between the softly murmured words of people sitting in Café Fiore. Outside, orange leaves swirl in the wind, losing their hold on the cold knuckles of tree branches. It is warm in the coffee shop, though, and the upholstered chair Jen sits in is soft and forgiving.

She sips from her decaf soy latté and lets her eyes momentarily wander from the open laptop in front of her. She watches an older man who reminds her of her father crossing the street, his unbuttoned coat flapping, umbrella turning inside out.

She has to fight the urge not to run out there and help him right his umbrella. She tries to be grateful that she isn’t fighting the weather, too. She knows when she picks up Jack and Ella from school they will refuse to wear their jackets and hats. They will cross their arms and shake their heads, and then complain about being cold.

Jen sighs and turns her attention back to the website she is designing for The Snake Man–a local guy who extracts venom from otherwise deadly species like the Black Mamba and African Rock Python and takes the snakes around to schools for assemblies. She only took The Snake Man on as a client because Jack saw his logo in an email request and insisted that “it’d be fun” and “maybe the snake man will let us go into his Serpent Mobile for free!”

As she plays with different fonts for the site’s body copy, her IM window pops open.

Her heart leaps.

It is him.

In the small blue and white rectangle he has written that he’s glad she’s online, that he misses her.

Her fingers hover over the keyboard, then begin to fly with the release of a hundred homing pigeons let loose over the city. She’s been waiting to hear from him, barely breathing she realizes now. She misses him too, she says. It feels like months since they saw each other last, even though it’s been only days.

He tells her he has just picked up Carly from Aikido. Carly is his fifteen-year-old daughter–a stout, practical girl with furious, pink acne and a head of magnificent strawberry blonde curls that she usually wears yanked back into a tight ponytail.

Did she earn her red stripe?

Yeah, but sensei scolded her for lack of enthusiasm. Let’s talk about you.

She tells him that nothing exciting is happening, that she’s working on the Snake Man’s site.

He tells her she’s talented, that he loves her work.

This is something Justin doesn’t say anymore. Did he ever? She can’t remember.

Their story, Justin and Jen’s, is as ancient to her now as old work boots that have been through winters and winters of sloppy mud and pouring rain and summers that are hot and dusty.

It started almost ten years before and sparkled in the beginning, of course – a get together with friends in a downtown hotel, a cute Justin who stared at her over the heads of others, too much prosecco, then nights and nights of partying on boats and in backyards and at her Belltown apartment she was lucky enough to share with no one.

Jen and Justin had their way with each other between the white sheets of the four-poster-bed she’d inherited from her parents and in the granite kitchen most twenty-somethings couldn’t afford and across her Sacha Lakic leather sofa.

Now they live in a comfortable but not luxurious craftsman-esque home in Wallingford and she thinks of her old apartment as her single girl asylum. Crazy, fun, over the top.

Words scroll down her screen. He is typing that he has a meeting, but just wanted to say hello.

Wait! She writes back. When are we going to see each other next?

She feels like an insecure high schooler asking that.

Just then, her cell phone bleats. She would happily ignore it if there wasn’t a chance her kids’ school was calling to tell her one of them had thrown up or fallen off the playground zipline or worse.

So she checks. She doesn’t recognize the number, but since he is getting offline anyway, she grabs the call.

He writes back, Thursday night? 

Quickly, she types, Yes and flips her laptop closed.

The person on the phone, some woman with a thin, nasally voice, tells her the news that cracks their lives in two.

Justin has been admitted to Swedish Hospital with a ruptured aneurysm.

Dear idiot neighbor

It’s a new feature! Wherein I’ll write a brief open letter to our idiot neighbors (see several posts back on how our formerly somewhat chummy relationship fell apart).

Dear Idiot Neighbor,

Please stop parking your ugly, gold Cadillac a foot into our driveway. I know you don’t want the Caddy to leak oil onto your own driveway (you’ve told me as much), but choosing a spot between our houses to distance yourself from the mess and making me “thread the needle”, so to speak, every time I back into the road is unacceptable. I know this is a first world problem, but you bug me so I’m going to let myself have this one.

Not only is the sight and placement of your car annoying, but letting a car leak oil is environmentally irresponsible. There are places you can get this fixed. No more than a few blocks away, in fact. I started the research for you!

So, get that leak repaired and move the geriatric mobile into your own driveway! We’ll both be happier. Thanks!

Dead for 5 minutes

It hit him like a rock to his skull. In fact, that’s what he thought it was at first.

He didn’t have the reasoning ability, in that moment, to wonder how someone would have a rock to throw in the glass and metal lobby of the Seacap building. Or why he’d be a target. But sudden, sharp pain pushed him to his knees, where he dropped his leather satchel on the gleaming tile floor.

He heard himself mutter, “Oh God, oh God,” was aware of the slapping of shoe soles coming toward him, then the room turned at a seventy degree angle and he had to fall flat on his back to keep from sliding away.

It wasn’t as if his life flashed before his eyes. Not that lame cliché. Moments and faces blipped forth, though:

Ella in a fake mustache and red, glittery tutu, Jack up to bat at his first Little League game, legs visibly shaking, lips sucked into his mouth, Jen flipping aebelskivers at the stove, wearing a thin camisole top and flannel pants, turning to look at him over her shoulder and smiling, sun blasting through the window and gilding her hair into honey.

Then there was himself as a kid playing on the heap of dirt that was his family’s side yard, dog paddling in Lake Michigan out to the big raft that meant you were hot stuff if you could reach it, his parents and brother hauling a Christmas tree through two-foot high snow banks to their Jeep, where they’d take it home and throw tinsel all over it, his dad leaving with a single duffel and Ziploc bag of snacks, saying he’d see them in a few days, which stretched into a few months and then a few years.

Memories garbled, like a water damaged film strip. Jen wept, holding hands with his father while his mother and the kids turned into blackbirds and soared into the pale blue sky. Ivy sprouted at time-lapse speed from his lawn, tangling around his Acura RLX. Then he was in the warm bucket seat, speeding forward as the vines ripped and flew off the sides of his car.

Voices asked if he was okay, requested his name, but he couldn’t move his tongue or lips to tell them no, he wasn’t okay and that he didn’t, at that moment, remember his name either.

And then, blackness fell.

Fugue state

Writing is hard for me right now. I want to do it. I want to love it. I miss my old blog, but too many people who I didn’t want reading it found it.

I’ve been working on something…in fits and starts…a new novel idea. The last one collapsed under the scaffolding of Serious Structure and Plotting that I tried to add after the shitty first draft was complete. I’ve realized that if I want my stories tight and salable, I have to build them that way from the ground up. And it remains to be seen if I can even plot my way out of a paper bag. I suck at it.

All this is to say: I’m going to be posting bits from my work in progress. I just need to put it out there, to know that someone, maybe only one or two people, are reading it and, possibly hopefully, in some part of their brains, waiting for the next sequence.

And I’d love any feedback those people see fit to give.

That is all. Thank you.

She spins

She spins and spins, the green fringe of her skirt levitating, fluttering, her arms at her sides, fingers curved as if each hand holds pieces of a broken ceramic bowl.

Two half-grown chicks, feathers sprouting awkwardly up through down, flutter and peck at her feet. She would drop bits of grain for them, but if they eat the grain they will die. Their half-grown chick tongues will hang from their half-grown chick beaks and they will collapse into the grass, their half-grown chick hearts no longer beating.

She doesn’t know what to do, so she just spins and spins some more.