I've spent a lot of time worrying about what this means to my kids, wondering if waking up unsure of mom's condition would affect them in a similar way to living with an alcoholic or living in economic uncertainty.
Well, maybe it will. And maybe that's not altogether a bad thing.
I've noticed some lessons my kids are learning from this that are often harder to come by these days (Say it with an eye roll like this: "Theeese days").
1. They are learning to wait.
In this age of instant gratification and entertainment through electronics, waiting is a lost art. I myself am not good at it and occasionally resort to scrolling pictures of funny animals in hats on Pinterest to pass the time.
Nowadays, we spend a lot of time in doctor's offices. The kids are old enough that they don't have to come along, but they do anyway. And they come without their own electronics. They spend several hours some weeks in waiting rooms. They use the time to read, draw, play games, and get to know the front office staff (at my rheumatologist's office, there is a space on their cupboards for the pictures my kids draw them). Sometimes they just people-watch or stare into space.
I am firmly convinced that should we ever end up in a Hunger Games-type situation, those who can stare into space will be the quickest to adjust.
Bonus lesson: I have also recently discovered that my kids suddenly know a lot more about pop culture than I'd expected. Apparently they have been reading entertainment and gossip magazines quite regularly in those waiting rooms.
Bonus lesson to the bonus lesson: They are learning to discern news from gossip.
2. They are learning to be self-sufficient.
Everyone in the family agrees that they would rather my healthy energy be used on family togetherness: field trips, education, delicious meals, visiting, parties, dates, and projects. So while I still do what I can of the housework, they pick up the slack -- all those repetitive energy suckers that are rough for any parents.
They do their own laundry, keep their rooms clean (desired, though not required), unload the groceries, clean their own bathroom, unload and load the dishwasher, take care of the pets, empty trash and recycling, help in yard, make their own lunches, sometimes make breakfast or dinner, etc. This process has become rather seamless, though it is more than many kids do nowadays (especially if TV families are any indication -- geez -- have you ever seen those kids from "Parenthood" do a chore?).
As they have assumed more responsibility, they have also requested more. My daughters have taken to fixing entire family meals, banning us from the kitchen, and serving them with flair. They are building their own shelves for their rooms. My son spends a lot of time finding new ways to keep the dogs active, delights in fixing things around the house, and loves a morning spent making everyone pancakes.
Their future roommates and partners will be very thankful for this lesson.
3. They are learning to be considerate.
There are days when I am unsteady on my feet. This means nobody can leave anything on the floor, lest I trip. There are days when the door is too heavy for me. They notice those moments and jump ahead to help. Conversely, they notice when I am capable of doing it myself and offer that space. They can tell when I am strong enough for a bear hug and in enough pain to need a gentle hug.
These are lessons I did not learn until I was in my late 20's and a pastor. A woman I'd never met came out of the sanctuary after worship to greet me and I grabbed her hand and shook firmly. She screamed and pulled her hand back. "Oh, honey, don't worry," she said with more kindness than I deserved, "You couldn't have known I have such arthritis." From then on, I always let the other person dictate the firmness of my handshake or hug.
On rougher days, they've started to ask things like, "Mamma, can I get you anything?" or "Mamma, before I go out to play, is there anything you need?" Sometimes they get a glass of water for themselves and spontaneously bring me one. Sometimes they bring each other one. The lessons spread.
4. They are learning to make choices and sacrifices.
It is expensive to have a chronic illness. Though we are lucky to have insurance and family help, all those co-pays and 10-20% payments, combined with the recent cross-country move, mean we are pinching many a copper penny around here. Nobody is truly suffering by any stretch of the imagination (we have clean drinking water and flushable toilets, after all) but there are choices to make: one activity over another, waiting for the book to be available from the library rather than buying it immediately for the Kindle, saving up for things we want (and sometimes need), making do with what we have, etc.
Everyone makes choices and, in doing so, we learn what is and isn't truly important to us.
5. They are learning that an illness does not change who a person is to you.
Haven't you ever wondered what would happen to your relationship if your partner were to suddenly go blind or lose a leg? Well, this is not nearly so dramatic, but my kids are learning what "in sickness and in health" really means. In many ways, chronic pain has brought my husband and I closer (and not just because he massages my feet and legs every night -- shout out to my HotNerd!). We have to work together, need to communicate (gone are the days when I could move quietly through pain), check-in with each other (I give him a daily pain/ability update, he tells me what he can take on, and we adjust), and be flexible. We also have to laugh, often about my pain. When I need to use a cane, I WANT him to laugh at me and make jokes about it. That laughter keeps us going.
I think a lesson like this can be truly life-changing for young people as they grow into committed relationships. It is also all too often lost in a culture like ours that discourages multi-generational co-habitation. When our kids don't get to see how grandma and grandpa's relationship evolves as they face aging together, it is more challenging to develop a sense of their own future long-term relationships. It can contribute to a the mindset that youth and perfection are priorities.
Most important, they are learning that their mother is no less a woman, no less interesting, no less a person than when I could bike 30 miles with them. This means our relationship is rooted in so much more than what I can DO for them.
6. They are learning compassion.
I have to take a hormone every morning that makes me, shall we say, "special" for an hour or two afterwards. They have created a "forgiveness zone" around those two hours, where manic mamma moments are released into the ether.
Likewise, when they reach a point where they'd really like to ride 30 miles with mamma again, but can't, I work to understand what that must be like.
These are just two small examples of how we are learning this lesson together.
7. They are learning not to judge by appearances.
One of my children has always been a self-appointed police officer. He was the first to notice that the person getting out of the car parked in the handicapped space could walk into the store. He is no longer so quick to condemn and often wonders aloud if the person might also have RA or perhaps is recovering from chemo. Observantly, he'll share, "Maybe he knows he is fine to walk in, but doesn't know how he'll feel walking out." Having seen me lose the use of my knee in the middle of a regular, ordinary moment, without provocation, he understands.
They also know that the checker with a frown on her face surely has a story we don't know and the parent sitting on the bench at the playground is likely more than just lazy or uninvolved. It is neither our place to judge nor our business.
Extending it even further, they understand that appearances do not tell a whole story. They see me on days when the thought of form-fitting clothing makes my skin scream and loose, sometimes grungy sweat-pants win. They've watched my weight crawl with each prescription of Prednisone and each cortisone shot. They know that I desperately want to exercise regularly but have to wait for good days (and only if those good days are flanked by days when it is okay to be sore and possibly less mobile). They get that shorter hair on me is easier than the longer hair they prefer.
And they are okay with all of it. I'm not sure I could have taught them these lessons so strongly any other way.
8. They are learning service.
I often hear people speak of service as if it were a box they need to check off at some point -- something for a transcript, to boost a future career, or an unspoken requirement of their faith. This is perhaps another consequence of our propensity to live insular lives, separate from our elders. Maybe it is a natural by-product of our competitive nature or our over-done culture. I am sure this perspective of service has prevailed for as long as I have lived.
There was a time in this country (I have seen it breathe in other countries), though, when service was a vital part of who people were. It wasn't something people planned, but just a function of being a human being in community.
As people living with someone who needs regular help, I think my kids have figured this out. In turn, I work to serve their needs in ways that I can. With that, we also learn that all service does not look the same.
9. They are learning that abilities do not define a person.
While I cannot currently kick the ball around, garden, or boogie board with the kids like their father, I am always the choice for a good story, a clever idea, problem solving, or a hearty laugh. We all have our thing. This one is simple. I see them working to translate it to their own abilities as well. Just because one sibling can do something, it doesn't mean they all should master that skill. If they can carry this through life, they will possess peaceful souls.
10. They are learning that it is okay to laugh and cry, often unexpectedly.
My eldest, who is also struggling with pain, often pushes through it. Often times, it is good to push through when possible. But I taught her to keep her pain to herself, so much so that on her worst day, the day of her birthday party, I walked in on her sobbing alone in pain. Not cool.
Now that I have no choice but to wave the white flag at times, she is learning to do the same. We are both learning balance -- when we need to flex and when we need to release, when to put pain first and when to let it fade into the moment.
We are also all learning that sometimes the best medicine for pain is to laugh, often times irreverently, at it -- like when I have to use my cane and my youngest walks beside me mimicking a woman at least 127 years old.
Though we would all certainly prefer not to have to deal with me having Rheumatoid Arthritis, there have been many gifts in this journey, lessons learned that might otherwise have taken many years and great heart-break.
This past month has given us three rough weeks physically and then a really good past week. During that good week, we had a mini-staycation, I completed several projects, I got a part-time, remote writing job, and we took several field trips. Still, even with me in full swing, the kids continued demonstrating the lessons they are learning. Nobody dropped their chores because I was feeling energetic. Consideration has not flown out the window.
The lessons are sticking and, for that, we are all grateful to Rheumatoid Arthritis.