Why I’m Glad My Kids Have a Mom With Chronic Illness

Some weeks ago, my daughter was slated to cheer for a city-wide basketball tournament. She had been talking about this event for weeks. On the morning of the big game, I woke up to a bad day. Sometimes I can just tell from the moment I open my eyes, and this was one of those days. Over breakfast, she begged me to still come to the game.

“I think I would need to come in the wheelchair,” I told her. I had never been to a school event in the chair. “I just can’t do it otherwise. How would you feel?”

She didn’t miss a beat.

“I would be proud of you,” she smiled at me, “because you would be there for me and you wouldn’t be embarrassed. You wouldn’t let it stop you.”

Her words resonated with me and I thought about them all day. I also rested all day. I saved up all the energy that I could for her game. When evening came, I wheeled into the packed gymnasium in front of what felt like hundreds of people and tried to hold my chin high. I was there for her, cheering for the cheerleader who beamed at me across the basketball court.

On the car ride home, I asked if anyone had noticed the chair.

“Oh, yeah, all my friends did,” she told me. “They asked me what was wrong, and they told me they felt badly for us. I told them they shouldn’t. You just have good days and bad days, and it’s a part of our life.”

She gave me a lot of food for thought that day. I spend so much of my time feeling guilty for the things I can’t do or for the moments I’m missing. I worry about the burden that’s often placed on them to help me. When one person in a family lives with chronic illness, the whole family lives with it.

But there are some very good things about this life, too. I recognize that this journey has probably shaped my kids more than almost any other experience of their childhood. And I’m glad. I wouldn’t wish for it, but I’m glad my kids have a mom with chronic illness. Here are just a few reasons why.

1. They are learning that there is more than one kind of “normal.”

There’s no denying that our life is far from “normal,” at least the normal that most of their friends experience. We frequently have to take my health into account, cancel plans, bring a cane or wheelchair, or find work-arounds. But, as my daughter so eloquently told her friends, this is just our life. We’ve normalized chronic illness for them. And in the process, we’ve normalized the truth that there really is no “normal.” Just as they have friends of other races and religions, they have friends and family with differing physical abilities or disabilities. I love that this is an accepted reality of the world to them. They have a leg up on understanding what true diversity means.

2. They are learning empathy.

I have to be honest and say I am often surprised by how perceptive and empathetic kids are. Some days they know how I’m feeling before I do. They’ve learned to watch me and watch each other to gauge where the other person is emotionally and physically. When someone is having a bad day, they have a deeper understanding of what they might be experiencing. I’ve lost count of the number of times their empathy has played a role at school with their friends. They just have a sense, a better understanding, of the range of emotions people experience. And I credit this illness journey for a lot of that.

3. They are learning to be selfless.

Hand in hand with empathy, I think, is selflessness. It’s not a popular topic, and it’s not a particularly comfortable one. But the most caring people on earth know how to be selfless at times. As a family we’ve had to give up activities that we looked forward to. We’ve had to pick up the slack when one of us (usually me) couldn’t contribute around the house. We’ve had to care for one another. Many times, my kids have had to set aside what they wanted to do for the sake of someone else (also usually me). And it’s taught them how to be selfless.

4. They are learning to be real with struggles.

There’s no veneer when you live with someone with chronic illness. While I try to shield them from the worst moments, the truth is they see it all. And I think that’s OK. Because they’re learning that there are ups and downs in every journey. They’re learning that the bad days don’t last forever–and neither do the good days. And we can be honest and genuine about both. They’re watching us as we learn to balance transparency with brooding or moping, and they follow suit. We are all in the reality of this situation together, and we’re about as real about it as anyone can be.

5. They are learning the importance of rest and pacing.

Before I was sick, we were like most families: jam-packed schedules, rushing from activity to activity, tag-teaming parenting. We were absolutely on a treadmill. When I got sick, that frantic pace ground to an almost complete halt. We were (and still are) committed to rest and pacing. I can’t function without them. And they’ve learned the importance of rest for themselves, too. As a family we prioritize carving out space to recover, and balancing periods of work and rest. It’s ironic that it took illness to teach us healthy habits, but I’m glad it has.

6. They are learning how to offer tangible help.

When someone is sick or hurting, my instinct is often to help. But I’ll be honest, I struggle to know what help to offer. I find myself offering vaguely to “help in any way I can,” which is a wonderful offer. But the things I’ve found most beneficial from others are specific, thoughtful offers of things like a meal, helping to clean, picking my kids up from school, etc. I’ve learned a lot about how to help through the way others have helped me, and my kids have learned right along with me. They are endlessly creative and they already come up with great ideas. They are learning to offer specific things, to be thoughtful, and to show up for others.

7. They are learning grit and perseverance.

Boy, is chronic illness a marathon! And not just for the person living with it, but for the whole family that lives with it. They may not experience all of the symptoms and limitations that impact my daily life, but they are living with illness nonetheless. The finish line is nowhere in sight, and the days and weeks sometimes feel very long. I am learning to settle in for the long haul in bad stretches and to hold on. It takes perseverance and grit to live with chronic illness. They are watching me live this out, and they’re finding their own endurance through it. We are learning together to hold on through the bad days, to look for the good moments, and to persevere. Their lives may not be marked by illnesses of their own, but they will face challenges and obstacles that require grit. They’ve had a great training ground for it.

8. They are learning to laugh.

In our house, we poke fun at my limitations as a means of coping. It’s never mean-spirited, and they always take their cues from me. One night, during a bit of a bad stretch, one of my sons was roughhousing with his brother and me (meaning I was on the sidelines laughing). His brother grabbed him and had him in a fake chokehold. My son called over his shoulder, “Wheel away, Mom, save yourself!” He suddenly stopped and looked at me seriously to gauge my response, afraid he had hurt my feelings. I laughed out loud.

We are real with the hurt and struggle, yes, but we don’t take ourselves too seriously either. This road is far too long for that. We joke regularly about my eighty-year-old body. We laugh at my brain fog and when I can’t find my words, we say that I’m “Loading,” or “Buffering.” My husband pops wheelies when he pushes me in the wheelchair. In short, we laugh. We have to. It’s one of the best ways I know to cope with something like chronic illness.

My kids are learning that it’s OK to laugh at hardship in appropriate ways. They’re learning that we can feel more than one emotion at a time: grief and laughter; sadness and joy. We are complicated people living complicated lives, and our emotions reflect it. They are discovering that a little joy lightens the load. And they are learning appropriate ways to find humor in dark places.

I would never wish for chronic illness, but as I told my Mom once, I can embrace it. I can see the good it’s done for me and for my family. The good hasn’t come without pain, but it hasn’t been wasted, either. And at the end of the day, I can honestly say I’m glad my kids have a mom with chronic illness.

Chasing Dreams and Grieving Them

I ordered the catalog some months ago on a whim. I’d been admiring the ad in the issues of Smithsonian I received from my in-laws, and one day when I was particularly feeling a sense of wanderlust, I ventured to the website and requested their brochure. I knew I would never afford the cruise, at least not while I had children at home and other responsibilities, but it didn’t keep me from dreaming. 

I’ve always been an Egyptophile. I’m fascinated by the history, the hieroglyphs, the legacy of their ancient past. I love everything about modern-day Egypt too: the people, the beautiful culture, the food, the sun-washed vistas. In my spare time, I watch every documentary I can get my hands on, read travel guides, contemplate learning Arabic. I’m no stranger to the experiences that can be had in Egypt, at least in theory. And this particular travel company promised everything: all-inclusive travel, VIP access to restricted sites, and even one-on-one meetings with some of the leading Egyptologists in the world; men and women I felt I knew already from the hours of documentaries I’d watched. I couldn’t wait to see what else the brochure promised. 

It took two months for the catalog to arrive. And in the meantime, my life turned upside down. 

I was no stranger to the sickness that suddenly engulfed me. I’d first become acquainted with it five years ago, when I found myself in a freefall of debilitating symptoms and a whirlwind of doctor appointments. I’d had two massive flare-ups (relapses, really) followed by two periods of relative remission. But things were different now. Sometime just before the second remission, I’d finally received my diagnoses: celiac disease and small fiber neuropathy. I had overhauled my diet and my life, maintaining a hypervigilant gluten-free diet, cutting back to part-time work, taking mandatory daily naps, and keeping what my neurologist and I called “status quo.” And I was better. I was functional, and even (sometimes) a little better than functional. 

I operated under the assumption that diagnosis and treatment had resolved my horrible symptoms, that as long as I maintained balance and strict dietary regimens, my symptoms would be kept to a minimum. I was free to imagine a future with exercise and travel and vacations to dream-worthy places like Egypt, with only my finances and some dietary modifications to hold me back. 

The third relapse came out of nowhere, fast and furious. One day I noticed headaches and increased weariness in my legs. Within a week, I was mostly confined to the couch or bed outside of work, unable to cook, shower, or walk around the block without experiencing total exhaustion. I was dizzy, struggled to see, had tremors, and muscle weakness. I went back to using my cane, and knew that any longer distances would again require a wheelchair. 

It wasn’t the symptoms themselves that rocked me to my core. It was the fact that they had come back–that they could come back. In spite of a diagnosis, in spite of careful management, in spite of nearly two years of keeping them at bay. They had come back. And that meant that now, for the rest of my life, they could do it again. I would never be free from the threat of relapse. 

All of this had transpired in the two months it took for the brochure to arrive. The package came late one evening. I couldn’t imagine what it was until I tore it open and discovered the book of golden sandy pictures. I felt a small thrill, and began flipping through the pages. Pyramids at sunset. Groups gathered at the feet of the Sphynx listening to world-famous Egyptologists. Boat tours on the Nile. All of it was beautiful. 

Suddenly the pictures began to blur. I found myself blinking to make sense of the words. My throat ached. 

“What’s wrong?” my husband asked as he glanced over at me. “Are you OK?”

It took me a moment to formulate the words that seemed to be caught on the lump in my throat.  

“I’ll never travel again,” I whispered. “I’ll never go to Egypt. It’s like the whole world is off-limits to me.”

The tears fell then, and I put my head in my hands and let them come. I’d been teetering on these tears for weeks, and it seemed fitting that Egypt would be the last straw. I let the grief flow. Not grief over Egypt necessarily (although it did break my heart). But grief over another season of loss: loss of myself; loss of my health; of my hobbies, my social life, my family. Loss of control over my body and my life. Loss of my dreams for the future. Loss of the assurance I’d had that everything would be all right moving forward, as long as I followed my carefully prescribed rules. Loss. 

And that is the underbelly of chronic illness: loss. There are silver linings, and opportunities, and coping mechanisms. All of them are true and good. But sometimes the reality sneaks up on us in the pages of a travel guide. It cuts through all of the things we’ve constructed to get ourselves through, and we find we are face to face with our own limitations, with our loss. Grief is necessary, an integral part of chronic illness. We have to face it to live fully in our illness.

I don’t know what your Egypt might be, but you no doubt have one; that one place that unraveled things for you and brought your limitations right to the forefront. I hope you have the courage to sit with it. Don’t let it linger long before you find a new dream, mind you, or find a way to make accommodations for your original dream. But sit with it. Let it do its work in you. This is chronic illness, all of it.

  • Disclaimer: I recognize that there are ways to make almost every dream accessible, even an all-access tour of Egypt. However, chronic illness and disability often require modification of those plans, and sometimes making alternative plans altogether. The world is NOT closed off to us; we simply need to find another entrance. Still, even this part of the journey comes with a sense of grief or loss, and we must face it full-on.

Of Love and Chronic Illness

It’s Valentines’ Day. Couples everywhere are flocking to restaurants and coffeeshops and romantic places. Love is in the air!

But love, and relationships in general, can be a little complicated if you live with chronic illness or a medical condition. Between physical limitations, flare-ups, medication adjustments, and doctor visits, it can seem like there’s not much room for romance.

This year my husband and I will celebrate seventeen years of marriage together. Many of those years have been impacted by my health. In fact, sometimes it feels as though our entire lives revolve around my symptoms. As more and more of our schedule is devoted to appointments and conversations are dominated by medical discussions, sometimes I feel more like his patient than his wife.

I have to imagine I’m not alone.

When you live with chronic illness, you learn to be adaptive. Best laid plans don’t always work out. For example, some years ago my husband and I went out of town for a weekend away. We don’t get away without our kids often, but we live for our getaways. We had tickets for a concert, and planned to spend some time enjoying the big city in which we were staying. I was at the height of a flare-up, and in addition to my usual fatigue and low energy, I was dependent on a cane to get around. On the night of the concert, it was cold and rainy and miserable. We arrived in town just in time for the show, with no time to stop for dinner. We parked several blocks from the venue and hurried through the sleet to our show. It was a great time! We had good seats, and we thoroughly enjoyed the concert. When it let out just before ten o’clock, we tumbled back out into the cold weather. I waited at the venue doors while my husband, graciously, brought the car. We returned to our hotel in hopes of finding the restaurant open. It was not. For the next two hours, we traipsed from one restaurant to another all across town. Every one had closed. Finally, exhausted and starving, we stumbled into a convenience store. We grabbed a handful of granola bars and mixed nuts and drinks. That night, at almost midnight, we sat on the edge of our hotel bed eating a late picnic of snacks. It’s still a memory that makes us laugh.

The next day, we had plans to visit an IKEA–a real treat, since we don’t have one nearby. While my husband had been excited about the concert, this shopping trip was at the top of the list of things I was anticipating. We parked as close as we could and wandered in. We searched, in vain, for a wheelchair. I was already running low after all of the expenditure of the night before. He asked me whether I could make it through the store on foot. I wasn’t about to give up on IKEA! So we went on. As we wound through the store, I became more and more depleted. We stopped in just about every room display to sit and rest. We joked that we were trying out all of the furniture, just in case. I remember almost nothing from the day, just the feeling that I had never imagined IKEA could be so enormous. It felt as though we would never get to the end of the route through the building. We finally reached the doors, and he again pulled up the car. I sat slumped in the front seat. We’d had many other plans for our time away, and several hours remaining together before we had to get home to our kids. I leaned my head into the car seat and cried. “I can’t do it,” I remember saying. “I just can’t do any more.” We returned home early. I was devastated.

Moments like these are all too common with chronic illness. Cancelled plans, unexpected symptoms… it all takes the wind out of romance sometimes.

But we are learning to adapt. When we are in a bad stretch, we make alternate plans. Recently, my parents offered to take our kids for a couple of days. Normally, this would have been the perfect opportunity to get out on the town and visit some favorite restaurants and events. But I just wasn’t up to it this time. In fact, our one quick trip to a shop for a few things was enough to exhaust me. So we made other plans. We ordered a gluten free charcuterie board from a local shop and enjoyed a picnic date at home. We rented a movie we’ve been wanting to see and curled up on the couch. We lit some candles and enjoyed a quiet dinner at the kitchen counter. It was wonderful.

And then there are the good days, sometimes unexpected. The sun is shining, I have a little more energy, and a space opens up in our schedules. On those days, we try to grab the bikes, or hit the trails, or do something together that we can’t do on the bad days. As my in-laws like to say, we “grab the gusto while we can.” It’s the name of the game with chronic illness. Adapt, adapt, for better or for worse!

I asked my husband one time whether he wished he had a wife who didn’t turn his life upside down. He looked at me as if I were crazy. We’ve had many ups and downs, sure. We’ve sometimes had more cancelled plans than plans that came to fruition. But we’ve also had hours of laughter as he pushed me in a wheelchair–often popping wheelies that made my stomach flip. We’ve had moments at hospital bedsides, whispering to each other about our deepest fears. We’ve had beautiful, healthy days that felt even more blissful because of the reprieve they represented. We’ve known each other at deep levels, in deep needs, through deep fears. In short, we’ve carried each other. We’ve adapted together. We’ve let our love be shaped, even by chronic illness. And it’s far more beautiful as a result.

And that is what love with chronic illness can be.

Making Lemonade… Or Supper

Sometimes chronic illness throws you a curveball. Maybe it’s a new symptom, or an embarrassing moment of the kind you hope someday you’ll laugh about. Maybe it’s a flare-up or relapse. One thing is for certain, and that is that nothing is ever certain.

After a long stretch of relative wellness, this month threw me one such curveball. I experienced a relapse of a magnitude that I haven’t encountered since I was first sick, and it has landed me squarely on my back.

After an especially difficult day, my teenage son offered to cook supper so that I could rest. I gratefully took him up on the offer and curled myself up on the couch. I closed my eyes and willed my body to recover, which of course never works. He hummed to himself in the kitchen as he sauteed meat and chopped vegetables.

My husband came home from work and sat down at the kitchen counter. My daughter stood at one end of the island, telling a story about her day with animated gestures and laughter. I was missing out.

I took a deep breath and wandered into the kitchen. I picked up a wooden spoon and began to stir the food simmering on the stove as I listened to the conversations. My legs ached, but I couldn’t bring myself to miss out on this little window of family time.

“Wait, Mom,” my son held up a hand. He reached for one of the tall stools tucked under the counter, and set it down in front of the stove. He smiled as I took the seat, then went back to shredding a block of cheese.

From across the room, my husband snapped a picture of us working side by side.

This is what it means to parent with a chronic illness. Sometimes it means missing out, yes. But sometimes it means finding a way to be a part of things. Sometimes it means making lemonade from lemons–or making supper, anyway.

Sometimes we cook from the comfort of a stool.