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RA Lessons I Hope to Teach My Children

As the mother of a three- and a five-year-old, I am frequently confronted with the ways rheumatoid arthritis impacts my ability to be an active parent. There are many times when my kids ask for piggy back rides or games of chase, to rough house or to be carried, and these activities would simply be too painful for me to grant these requests. As this disease often fluctuates in its severity, there are days when I can give them “airplane rides” or hold their hands while they walk their feet up my legs until they return to the ground with a backward flip. Then there are other days when they want to do those same activities and I’m not feeling well enough to lift their weight, to tightly grasp their hands, or even to have their heads resting on my shoulders during story time. Rheumatoid arthritis is disease that baffles adults, and I can only imagine how strange it must seem to a child.

While I often focus on the ways RA prevents me from engaging in all the activities I’d like to do, I am making a conscious effort to reflect on the lessons my kids might learn from having a mother with physical limitations. Here are the things I hope they will learn, the lessons I hope to teach them, as we navigate the impacts of RA on our family life.

Be compassionate. The world is full of pain and hurt of all varieties, physical and emotional. Humans are often quick to judge each other, although we rarely have all the information required to make an accurate judgment. When I cannot engage with my children in a way we would both enjoy, I explain this to them. For example, I say, “I love snuggling close with you and having your head on my shoulder. Tonight my shoulder hurts, and having anything touch it, even your sweet head, makes it hurt worse. Can you sit right next to me while we read, without touching? Then as soon as my joints feel better, we will snuggle close again the way we both like to.”

In the present moment I hope to convey to them that when I have to keep them at an arm’s length, it’s not a personal rejection, but rather a physical necessity. Long term, I hope they are learning that everyone has needs, and that being sensitive to those needs is a way to demonstrate love to others.

Suffering impacts the way we act, and we don’t always know when someone’s suffering. Rheumatoid arthritis not only affects my body; it also affects my mood. When I am experiencing significant pain and/or fatigue, it is a challenge to be as positive and as nurturing as I’d like to be. Therefore, when I realize RA has impacted my patience level and I’ve been quick tempered, I’ll say, “I’m sorry that I said that in an unkind way. Right now my bones hurt, and it’s making me cranky. Remember when you hurt your knee last week, and you got upset with your brother when he was trying to play with you? When my bones hurt, I get sad and cranky too. I’m going to try my best to use a kind tone of voice even when I don’t feel well. It will help me if we can all try to be extra kind to each other.”

I hope they can learn that when a person is unkind, it likely has nothing to do with them but rather is due to that person being in physical or emotional pain. By taking a step away from a self-involved focus to an understanding that everyone has a unique reality, it becomes easier not to take things personally. I hope that when they encounter a negative response from another person, instead of thinking, “That person’s a jerk” or “I wonder why s/he doesn’t like me,” they will instead think, “S/he isn’t happy right now. I wonder what that’s stemming from.” Learning to approach others with curiosity instead of rushing to judgment and/or taking everything personally could open my children up to much more fulfilling relationships with others as they get older.

Kindness is comforting. We often can’t solve other people’s problems, nor resolve all of our own. However, kindness always helps. When I am in pain, I let my children know I need kindness. I might say, “Right now my hip really hurts. It would help if you could tell me a story/sing me a song/give me a hug/etc.” They are indeed learning to respond to my flares with loving attention. For instance, sometimes I’ll be in bed with a heating pad and they will run into my room and bound onto the mattress. When I say, “Please be gentle! My bones hurt and they need to be still,” my kids will immediately settle down, be cautious as they come closer to me, and give me kisses and gentle hugs.

While I will likely never stop wishing RA didn’t intrude on special moments with my kids, when I see evidence of their budding compassion and consideration, it warms my heart. For example, my boisterous three-year old son will sometimes pause to say, “Mommy, does your leg hurt today?” before he starts trying to climb up me as if I were a tree. My five-year-old will ask, “Do you feel okay Mama?” before asking to be carried. I do wish there wasn’t cause for them to be so sensitive to my needs, but I am proud that they are learning to be sensitive.

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