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.