Essay at The Refresh

Image Description: A family of four, two boys, a mother and father, bundled up in coats in front of a glacier

Hi Everyone!

I have an essay/article up at The Refresh called Traveling While Chronically Ill (clicking on the title will take you there). This is a reworked blog post from last summer about my experiences planning carefully before vacations. This version has some more information/tips that I find helpful.

Hope you’re all doing well!



Essay at The Manifest-Station

Boys room
Image Description: A child’s bedroom with two beds and one wall that is mostly blue with paintings of planets, stars and a close-up of the moon on it.

Hi everyone!

Today I have an essay up at The Manifest-Station called Bedtime (you can click on the title to link to the essay).

This is a story of two bedtimes, one recent and one more than six years ago. Part of the story is about the painful limitations I encountered being a parent with chronic illnesses. Part of the story is about how miraculous getting to be a parent at all feels.

This is a chapter in the book I am working on called Quote/Unquote “Healthy”.  I announced here last summer that I hoped to have it done before the 2017-2018 school year. Well, illness gets in the way sometimes (and adds more chapters I need to write about!) but I hope to have the full manuscript done by November.

The Manifest-Station has given this story a wonderful home, and a gorgeous accompanying picture that is beautiful…and makes me smile as it doesn’t look much like the room this actually took place in. So, for you all I included the real thing, for authenticity’s sake.

I hope you are able to check it out.



Political Essay at Progressives of Kane County

author pic Heidi

Hello everyone,

This weekend is an interesting (but not bad at all) one for me.

In the midst of celebrating Mother’s Day, I am attending a Die-In to protest the AHCA at a local representative’s office (Not mine, my representative is an outstanding advocate for us-the representative for the  neighboring suburbs is not).

I announced I would probably leave the house by 10:15 am to which my kids asked, “Where are you going?”

Without looking up from his phone my husband deadpanned, “To die.”

Luckily my kids are, by the ages of eight and ten, used to being teased by my husband and always ask me, “No really, what’s going on?”

I briefly explained that a lot of people voted against my ability to have affordable health care in the future, that people will die without treatment and so we were symbolically going to pretend to be dead for a few minutes in front of a congressman’s office, to demonstrate what he voted for.

Along those lines, and in a less brief format, today also I have an essay up at the website for the Progressives of Kane County titled “The AHCA Will Be Dangerous to Us All” (Click on the title to take you the essay). It details a little bit of my struggles with chronic illness, my reaction to the recent vote and what it will mean for my family if it becomes law.

This website is an excellent resource for anyone who wants to fight for progressive values in Kane County, Illinois, complete with calls to action, meeting times, important resource links. Please check it out for more info if you live in the area.

So, in a little bit I’m off to pretend to be a corpse. Then I’m going to visit with my parents and my kids in a park filled with lilac bushes, give my mom her customized #Iamapreexistingcondition t-shirt (I haven’t made my mom something with markers in a looooong time, I felt like a kid again) and enjoy both having a wonderful mother and being a mom to some pretty awesome kids.

Who are probably going to play Minecraft while I lie in a ditch somewhere.

Take care!


When Fiction and Reality Meet


My favorite reading experience, where the book I was reading matched the circumstances around me perfectly, used to be easy to pick out. I often used to take the train from the Chicago suburbs to Champaign-Urbana, when I bounced back and forth between my parents’ house and college. This particular trip I took was in the evening in the middle of a cold, clear winter. While the train was usually full enough that I was obliged to make small talk with a seatmate, this time it was almost completely empty and silent. Every other time I sat under fluorescent lights with dull grey metal all around me. This time I found myself in a refurbished Pullman car. Red velvet lined the seats, with a fringed gold trim edging the armrest. A sumptuous carpet rested under my feet. The lights had a soft glow emanating from ornate sconces. I burrowed myself into my seat, cushioned and alone, and picked up where I had left off reading The Shining for the very first time. The opulence matched The Overlook Hotel, and as I glanced out the window at an endless stretching snowy winter, seeing a single farmhouse light in the distance echoed my own isolation and that of the Torrences. For nearly twenty years that has been my favorite.

I may have a new contender. I have been sick with a really horrible protracted cold, and my boys are now sick with the same excruciatingly slow virus. My husband is traveling for work, and the boys have now missed three days of school. Last night my oldest wanted to sleep on the couch, so when he went to bed I tiptoed to my room and grabbed a book since I was not going to be able to fall asleep at 8:30. I had bought Room by Emma Donoghue more than a year ago and hadn’t touched it since. I’m not sure if I was worried that my heart wouldn’t be able to take it, but for some reason it nearly jumped off the shelf at me this time.

We are told the story through the perspective of a five-year-old boy named Jack. He and his mother are held captive in a small room by the man who kidnapped his mother years ago. The book opens on his fifth birthday and describes how they manage to make a life for themselves in “Room”, a place Jack has never left. It opens on the day of the spring equinox. I began to feel eerie, as yesterday was the spring equinox as well. Jack describes what TV shows he likes to watch, and because this is set in contemporary times, they are all shows my children watched too. Backyardigans, Wonder Pets, Dora the Explorer. The way his mother helps structure their days reminded me so much of what it was like when the boys were small, when one day can bleed into the next if it is just you together in the house, seeing no one else, going nowhere else. A state I am in right now. It is just us, quarantined away from the world, only using the resources we have on hand, and with each other as our sole company. It is both intimate and confining all at once.

Jack counts his teeth with his tongue when he is trying to distract himself. Each time he does I do the same and am reminded that a crown popped off one of my teeth earlier in the day. As I think about when I’ll be able to get that fixed Ma takes a ‘killer’ (painkiller) because her bad tooth is aching very badly. She is also waiting to get her tooth fixed, though for her it may never happen.

I read more than half the book in that one sitting, entranced, both seeing myself and the day I just had and the day I was about to have stretched before me, and seeing how much more I had that they didn’t. A window. A telephone. Food in the cupboards. The ability to open the door and feel fresh air on my face. Things I would never have stopped to appreciate that I still have even if I don’t have the Outside right now.

I’m not capturing how odd it felt, how odd it feels when your reality and fiction blends so perfectly together that you cannot extract one from the other. It isn’t something you can plan, though luckily sometimes it comes together. I read a scene from The Signature of All Things where the protagonist laments how useless paper is on a tropical island exactly one day before discovering all our paper was a humid mess in Puerto Rico. We read Harry Potter for the first time through the 2016 election and the coincidences were spooky (though that is an essay for another time). I guess I’ll tell this story better after twenty years than I do now, but I wanted to say…

Books are magic in a totally unpredictable and unusual way. And in the middle of a boring household cold, I got to experience that again.


International Women’s Day and Day Without a Woman


Today is International Women’s Day. This particular March 8th is also, in the United States, Day Without a Woman – a general strike to highlight the importance of women and how their contributions of both paid and unpaid labor are grossly underappreciated. I have been spending all of this week leading up to today trying to figure out how best to honor both.

The easiest way to support the day and the strike is to wear red, a show of solidarity with women fighting for equal rights, opportunities and recognition. Done. I’m wearing red, my two kids are wearing red. Easy.

red shirt

The next is slightly harder. As women purchase 70-80 percent of items and services for sale, women are asked to refrain from purchasing anything today, to demonstrate how much our purchasing power is worth. Another way to do that is to purchase exclusively from women-owned companies. I will be purchasing an item to support the wonderful online site The Establishment, a bastion of intersectional feminism and support for writers (they pay every writer for every story they publish-which is unusual and welcome in the world of online publishing). I won’t be buying lunch, or dinner, or groceries, or clothes, or books, or my kids’ haircuts or an oil change for the car today.

The last is the most difficult. Women are called upon to strike from all paid and unpaid labor today. Except for the once-a-month tutoring gig I do get paid for, all my labor is unpaid right now. I am a published writer who last got paid for an essay in 2007, and a stay-at-home mom. When my husband is not traveling for work, we already share household chores and child-raising tasks equitably. He doesn’t need a reminder of what I do, and I feel appreciated. And if I refrain from writing, I lose the opportunity to advocate for recognition of the work that women do. So I won’t be taking time away from unpaid labor.

I also never thought of it this way before, but I have women in my employ. I am a chronically ill person who functions most weeks as a single mother would, taking care of everything while my husband travels for work. We have a service come and clean our house every two weeks to help. Vacuuming, washing floors, dusting high shelves, scrubbing toilets: I can technically still do all these things. However, the pain and energy cost of doing these chores (my fibromyalgia tends to flare) leaves me bankrupt for days sometimes, unable to do other things that need doing. I am so grateful to have the three women who do this work for me. Wednesdays happen to be the days they come. I appreciate what they provide for me so much, and know I am a more productive person if I let this work still happen. If they do strike today, I am completely supportive and understanding. If they do not, I will try to make sure to tell them how much I appreciate the work they do.

But, most of all, what I want to do today is explain just how many women make my world possible. I have lived in the world of women for a decade, a world of stay-at-home moms, retail workers, grade school teachers, pediatricians, nurses and volunteers.

I will start with school. From the early intervention services that my youngest had at age two, to the fourth-grade teacher my oldest has now, almost every single educator my kids have had have been women. Since preschool my oldest has been taught by at least thirty teachers and four teacher’s aides, and only three of them have been men. Since early intervention my youngest has had four speech therapists, and at least twenty-four teachers and teacher’s aides, I think one of whom has been a man. We have a male principal, but the vast majority of workers at the school, from the school secretaries to the lunch moms to the volunteers who organize fundraisers and room parties, are women.  Grade school workers are notoriously underpaid and in a capitalist society being underpaid means being underappreciated. I love our school.

I went to work out today. Seven out of the nine receptionists I see regularly are women. When I peek in on classes, I have yet to see a male instructor. Most of the trainers are women. All of the instructors for early childhood classes at my park district are women.

I thought about spending time at our library. I have seen two male librarians over the course of nine years.

Where we get our boys hair cut, eight out of the nine hairdressers I see regularly are women.

Grocery stores, at least half the employees are women. Fast food and slower paced restaurants seem to be the same, at about 50%. So is our local post office.

Clothing and shoe stores? Almost 100% women.

Our local food pantry and community services administrators? 80% women.

Emergency room at our local hospital? The boys and I have only ever seen two male nurse versus about twenty female nurses. We’ve seen two male doctors versus at least ten female doctors.

The pediatrician’s office? All the nurses are women. Half the doctors are as well.

We would visit my mother when she worked at the offices for our local church. A full half of the support staff the offices, and roughly 90 percent of the teachers for both year-round parochial school and CCD were women. And these are just the paid positions. Mothers often volunteer to help even more. In fact that’s how my mother got her foot in the door for this job in the first place.

Most of the women I know, whether they work outside the home or not, do vast amounts of unpaid and unappreciated labor. I once had a conversation with other moms who were completely shocked that my husband did the grocery shopping for our household. I was told that to expect their husbands to do this task was completely unthinkable. Working women still do more household and child-rearing chores then working men. Stay-at-home mothers are still looked down on as if they aren’t contributing.

Most caregivers for disabled people and the elderly are women, both paid professionals and unpaid family members.

On top of all this, is the emotional labor that I have seen women do for free. The labor of keeping relationships healthy, families emotionally whole, communities functioning and working together.

The contributions women make to this country, to the world, are staggering.

The last other thing I am going to try to do today is to spend time not only thinking about how much would be lost without women doing the too-often invisible work of the world, but how much would be lost without their voices too. I have set my playlist to all the music I own either written or sung by women. I am reading I Am Malala for the first time.

women's voices


This is how I will spend today.

Stoner Conversations

A really good friend of mine once told me, totally unaware that I was then a hormonally insecure mess of a mom-of-small-children, that she always thought I would do really well with my kids when they we like ten. At the time I took it to mean that I must be hopeless with babies (I kind of am) and threenagers (I do tend to lose my mind), not that I would really hit my stride once my kids got to be tweens. It is a compliment that has taken me years to accept both in its truth and its sweetness. I am really good with kids approaching ten.

It could be that I’m just good with my kids, one of whom is approaching ten and the other who is seven. We’ve have had people ask us what we do with the boys – they are pretty well-behaved, empathetic and that all-important measure (insert big eye roll here) they standardized test really well. I don’t have a great answer that is easy to bust out over small talk, because the real answer is that we have a lot of stoner conversations. Without anyone being actually stoned, of course.

Once your kids are verbal and start asking questions, you need to answer them and start asking questions of your own.Whatever musings pop up, man we take our time exploring them regardless of what else needs to happen. We’ve talked over whether a diamond could melt in a volcano and what that might look like. We’ve gone over The Garden of Eden a few times; “So God can make a talking snake that tries to tempt people to be bad, but he can’t let Adam and Eve get away with breaking a rule he himself made? Is God all-powerful or not?” I get questions like, “Can I try to catch fish with a mosquito net?” and “What if I made a tiny computer for my stuffed animals?” and “Do you think Voldemort is milking a snake and drinking it’s venom to make himself into a snake?” The other day we had a lengthy discussion about whether or not one of our hands was fatter than the other and why that might be.




My oldest asked, “What if people made up the idea of souls and heaven and hell to get people to do what they say?” My youngest asserted that if someone was doing nothing they were still doing something. Damn, it’s fun.

We are thinking critically non-stop around here. When you take a stoner conversation seriously, no matter how goofy the topic may be, if you tease it out and give it time and attention and try to figure out whether mosquitos could bite God if God is invisible, you find stuff out. You learn facts,




You learn how to argue, you learn how to imagine, you learn that creativity and questions are wonderful things, you learn how to dig deep, you learn how to analyze. You learn that there are mysteries. You learn that wondering is fun. Curiosity is a gateway to deep learning.

And ambiguity is a gateway to open-mindedness. You learn the complex idea that maybe there is no right answer. Sitting in the ambiguity that comes after the question, “Why did people think people had souls to begin with, who came up with that idea in the first place?”; uncertainty unsettles kids in a great way-my guys never assume, even though they are quite smart, that they have all the answers or that the way they see the world is the only right way. These conversations make them open to new ideas and new experiences and new people.

So, if your kid asks if you think that aliens might have other senses that we don’t even know about some morning as they are scooping up Frosted Flakes and you are trying your damnedest to pack a lunch and shove a signed permission slip into their backpack, know that the best thing you might do for them in that moment is to say, “Like, are we talking aliens who live underwater, or ones that are humanoid, or like giant blobs who don’t even need to eat? Because if we are talking humanoid creatures what sort of sense could they have we don’t? If we’re talking blobs, man, who knows what they would be able to do, that’s a whole other ballgame.” It seems to be working out well for us.

This Should Be Mentioned in the Brochure


While I love mountains, with their massive size and impressive countenance and sheer arrogance, I usually do better admiring them from afar. I have a fear of heights and the thin air seems to make me feel unwell – my breathing is labored and since my breathing mimics a panic attack, my brain seems to think I should be feeling far more anxious than I am and begins to really get nervous. Most times I have tried to enjoy mountains I have gone from almost sea level to a peak in less than a day, I’ve been assured by guidebooks if I had only let myself get acclimated longer I would have been just fine. We never reached the accessible peak in El Yunque in Puerto Rico because I got nervous and couldn’t breathe and so got more nervous and pictured my then five-year-old son falling over the edge of a cliff and I made us turn around. In Alaska this last summer we went from the coastal city of Anchorage to Polychrome Pass in Denali National Park (at 4,000 feet in elevation) in the span of twenty-four hours and I was suffering. It didn’t help that I had also picked up the stomach flu from one of the boys who had picked it up on the airplane ride in, but that is a different story. The mountains are beautiful and so vast that I finally realized that there are places on earth we won’t ever be able to truly destroy-we would kill ourselves off first before we could uproot Denali-and that is comforting. I now really understand the feeling of being built upon rock instead of sand, solid and unmovable. But the mountains aren’t mine, not the way the sea is.

Seward, Alaska is about a two and a half hour drive south of Anchorage. You leave town by Highway 1 (there are really only a few highways connecting all of Alaska) which winds for about an hour around a massive ocean inlet called the Turnagain Arm (named so because explorers looking for a Northwest Passage thought they had it found it but became landlocked and had to regretfully turn again). Two lanes cut between the Chugach Mountains and the ocean, leaving little room to not feel claustrophobic or nervous. Well, for me, my husband seemed unphased driving past harrowing cliffs. Once you leave the immense Turnagain Arm behind, you wind through more mountains and past yellow diamond signs that warn of avalanches in the winter. It is not winter and I am grateful for once that the Chicago suburbs are flat and home to a million plows and salt trucks. Finally it doesn’t seem as if the mountains will ever end when you come upon the sea, abruptly enough you can imagine driving off of a pier because you glanced in the rearview mirror at the wrong time. You have arrived at a port town, a hub for cruise ships and fishing fleets, an access point to fjords and glaciers and water that is clean and cold and a strange crystal green.

Here is where we needed to come to see the other half of “things we may never again see in real life”. Denali gave us mountains, and gold rush cabins, grizzly bears and caribou. Seward will give us whales, bald eagles, puffins, glaciers. I have prepared. We have sea-sickness bands, all of us. We have leggings and winter coats and hats and gloves (things that took up a whole other suitcase, things we will only need here). We are set to board a tour boat with catamarans (which I am told help to prevent seasickness). There is an outside deck, and an inside cabin with huge windows where, when we get cold and tired, we can rest and sip hot chocolate or tea and just be taken to beautiful places. This is more exciting to me.

My childhood was spent on boats, every summer until I was twelve. Each Saturday we would drive an hour or so north to the Chain-Of-Lakes. We had speedboats, the first one I was on as a toddler I am told looked like the Batmobile. There was Big Red, then a white and teal boat that I know traveled to Missouri with us one family reunion, and finally the Over-Ripe Banana Boat which was banana yellow with inexplicable brown glittered panels. Admittedly the names for the boats were my own, but maybe I shared them with my family at the time. My mom would pack a cooler and eventually four children up in our mini-van, my dad would drive us to the slip then steer the boat all day. The three of us who took after the Italian side in looks would be slathered in SPF 8 before getting strapped into life jackets, my Irish red-headed brother got SPF 50.

The two things that made me happiest on the boat was when we would be going fast enough to feel wind pushing back our hair and to get to stare endlessly at the sparkles on the water as sunlight hit the tiny peaks of waves. I could spend hours just experiencing those two things.

My husband had declared early on in planning this trip that we needed to find a whale-watching tour, and that we would go as far as necessary to find a tour that could all but guarantee we would. Nobody, on their website, would be so foolish as to promise that you would get to see orcas and humpback whales, but I had read enough reviews that I felt fairly certain we would. I secretly would have still been overjoyed to be on the water without spotting any aquatic life, but I knew he wouldn’t have. I held my breath, just a little, for his sake.

I needn’t have worried.

Within the first half hour we spotted a pod of orcas, a family that the fisherman and tour guides knew quite well as they like to visit the boat and steal fish off of lines. The patriarch of this group had a six-foot tall dorsal fin, and researchers had given him the name “El Dorado”. He led his family, calf in tow, not more than forty feet from the bow of the boat. We were all on the deck watching as their heads would peek up in a friendly gesture and then they would disappear and reappear either further or closer than you would have thought. It was disconcerting to not be able to predict where they would be, most of their journey beneath the waves unseen and their speed and depth and maneuvers all a mystery. They stayed with us for a good long while and we stayed with them until the captain felt we had had our fill and knew we had more to see.

Over the next six hours, we would sometimes skim the water at about 26 knots (I know because they had TVs with our coordinates and speed all throughout the cabin) fast enough that the wind would whip your hat off your head, but not so fast that you were automatically forced inside. Then we would loll in the ocean, trying not to frighten away immense sea otters floating on their backs in the middle of nowhere, or sneaking up on a pod of humpback whales. One adolescent whale (apparently the size of the creature made its age obvious to the captain when it wasn’t obvious to the rest of us) was showing off, leaping out of the water again and again, slapping his fins, doing the backstroke. We glided past the perches of sea lions and bald eagles, and I got to see my husband and kids rapt with attention the entire time. We got to find out that puffins flap their wings like they are graceless heavy hummingbirds when they try to take off. And we felt nothing but affection for their goofiness.

Told we would be going to the glacier next, I brought my youngest into the cabin to get extra layers put on, while my husband stayed at the bow of the boat, camera around his neck, sharing a moment with my oldest. Once we got to the glacier, where balls of ice snapped, crackled and popped in the water below us, their teeth were chattering. The crew used a net to fish one crystal ball out of the ocean for us to hold as we stared at this massive formation, thundering as its blue sides calved. We had been wearing short sleeves on shore, and now we were wearing leggings and winter jackets, hats and gloves. This was the last big thing on the itinerary for this tour, a culmination of ALASKA, writ large. The photo-op to show us later that we had been in this magical place, that we had seen these magical creatures. We had gotten to visit them, stopped by for a chat, enjoyed their home instead of forcing them to perform for our amusement in ours. We got to gaze up at a sheer wall of ice that had been crumbling and advancing for thousands of years without really diminishing. This was it.


The ride back was supposed to be the denouement. The bobbing rest of being brought back to shore again, complete with just-baked chocolate chip cookies and the opportunity to purchase a booklet of pictures taken near the Kenai Fjords we had just seen. I wasn’t ready to be done, though, and while most of the passengers and my own little family stayed inside I went back out to the bow.

This, the sea, this is mine.

Now was the time, though everyone on board had been friendly, gracious and excited as we were, I was finally free from having other people in my sightline. I could pretend that I was alone flying above the icy water. Away from the glacier, now, I took off my hat and let the wind whip through my hair, twisting and knotting and tangling it up however it liked. All around me was the sparkle of blue-green water, nearly three hundred and sixty degrees of dazzling expansiveness. The enormous rock formations loomed as we passed them, I filled my lungs over and over with beauty and speed and freedom. When I thought I had had enough I began to go back towards the cabin, but would stop and stay longer. Once forty-five minutes passed I felt guilt at wanting to pretend I was alone so long, and came back to see how my children and husband were faring. One of my children though wanted to go back with me, and I was overjoyed. I helped guide him bracing my feet against the rock and sway feeling more securely grounded than I had in a long time.

I wordlessly shared my beauty with him holding his shoulders and smiling. When he had breathed deeply enough, I consented to going back to rejoin the no less beautiful world of my family again. Then my other son wanted to have a moment with me on the bow, too, and I happily went back one last time. With him, I finally saw that we were really approaching shore, that this would be closing. It had to, and I finally felt ready to let it conclude. I hadn’t been ready to let it go before I really needed to, but now felt steady knowing I had received enough to sustain me for a long time after.

This is mine, this was something given to me that cannot be taken away.

And they didn’t even advertise this as part of the tour. They didn’t know how much I needed that.