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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • rockcandi
    2 years ago

    Thanks Tamara! I’ve been reading a lot of your posts and feel inspired when I do bc you’re a mom of two young kids and bc I love the way you put my feelings about having RA and a young child into words bc they’re so similar to your feelings. It’s nice to know that, although I don’t want to see others suffering from RA or any other painful chronic diseases, I’m not alone. When I can’t tell the people in my life how I’m feeling about a certain thing bc they just don’t get it and can be judgmental, now I can get on here and see that others feel the way I do. I cried when I read the part about how it breaks your heart every time when you have to tell your kids they can’t touch you in certain ways, granted I am on 40 mg of Prednisone right now and would cry at the drop of a hat, but it really is a heart breaking thing. Also bc I’m taking Prednisone I can’t really focus so it’s hard to think of what I want to say so I won’t be posting much until I can think more clearly. Anyway, thank you for commenting back to me and for understanding!

  • Tamara Haag moderator author
    2 years ago

    Hey Rockcandi,

    You just made my day! Every time a person tells me anything I’ve written has been helpful it is so powerful for me, and is a bright silver lining on this dark storm cloud that is living with RA. Thank you for sharing your kind words.

    I’m so sorry to hear about the 40mg of prednisone! I have such a love/hate relationship with that drug, as it does bring relief but with so much baggage of side effects. In case it’s helpful to know you’re not alone in the prednisone boat, here’s an article I wrote about the emotions I have when I’m on it: https://rheumatoidarthritis.net/living/the-predni-zone/. You’ll notice “weepy” isn’t on there, which is why it’s so very helpful to have people like you who share their experiences. Collectively, when so many people facing the same challenge share their story, just about every aspect of it can be covered. I too find it very powerful to read others’ experiences and know I’m not alone.

    Thank you so much for sharing, and I hope you will continue to do so!

    Gentle hugs,
    Tamara

  • rockcandi
    2 years ago

    I am extremely thankful to both of you for sharing! You both have awesome kids and you’ve done amazingly with them. I pray that I will be able to do the same with my 2 yo son. I think I should’ve been doing things differently thus far, but I’m not beating myself up about it. He’s an only child and likely always will be so there’s the concern that he’ll be “spoiled” and believe that the world revolves around him. I’ve had RA since I was 6 and am now 36. I’ve often worried that he will miss out on so much more than he would’ve had he been born when I was in my early 20s as my “bad” days have become at least 5 out of 7 a week as compared to when I was 21 when they were very few and far between. You’ve both given me very useful tools to help me balance what he’ll miss out on and what he’ll learn. Up until he was about 22 months (he’s 25 months now) I’d do anything and everything I could to make him comfortable and try not to let him miss out on anything although it was causing severe pain. Since I’ve gotten into this bad flare and bc he’s gotten so much heavier and able to understand what I’m saying to him I’ve been telling him a lot more often that Mommy just isn’t able to do whatever it is were both wanting to do at the time. He seems to be beginning to understand that there’s an actual reason besides me just not wanting to. Thank you both for wonderful advice!

  • Tamara Haag moderator author
    2 years ago

    Hi Rockcandi,

    Thank you so much for sharing! I’m glad to hear you say “I’m not beating myself up about it.” Even parents without the challenges we face beat themselves up. Parenting is the most important job there is, and is the only one that is truly 24/7, as even when others are caring for/educating our children we are still thinking about them and “on call.”

    In case it helps, I will share an example that makes me feel better. When I was in my 20s I used to be a counselor at a camp for kids with Juvenile Rheumatoid Arthritis. There was another counselor who had severe RA and had had six joint replacements. Her daughter was a teenager and served as a junior counselor for the camp. She is also an only child. I was so impressed with her maturity, responsibility, and compassion, and when you threw in that she was only a teenager it was simply incredible. I have no doubt that so much of that developed in response to living with a parent with a severe chronic health condition.

    Flash forward 10 years, and that impressive teenager is now in her late 20s and works as Child Life Specialist helping children through their hospital stays. Coincidence? I think not. If my kids can turn out half as well as her, I’ll be proud.

    We would not choose this for ourselves, and we would not choose this for our kids. I would love to never have to tell my kids they can’t sit on my lap or snuggle against me during stories or that I can’t read to them/play with them/go to park with them because I’m having a flare. Those things hurt my heart each and every time. But they are deeply loved, and they know it.

    The love you have for your son shows in all your concern for him. The love is what’s most important, and as he gets older he will understand more and more what “Mommy’s bones hurt” (etc.) means.

    Continue to be kind to yourself, and thank you for sharing, as it helps all of us RA Warrior Mamas. Please share any time you feel so inclined, as there is power in sharing our stories and knowing we’re not alone.

    Wishing you all the best,
    Tamara

  • Dawn
    4 years ago

    I’ve had JRA since I was one. When I had my child, I worried about being “good enough” as a parent. There were so many things I physically couldn’t do, but there were experiences my child had that his young friends with able-bodied parents envied. Even before I used a wheelchair full-time, I always used one when we went out to the park, zoo, shopping, etc. When he was young, my kid got to ride in my lap whenever he was tired of walking or just wanted a snuggle. His friends were would often want a wheelchair ride when they went out with us. I think growing up with a disabled parent helped my son develop a strong sense of empathy and responsibility. He learned to pick up his things and keep them off the floor by age 2 because ‘mommy can’t walk over things.’ As he grew older, he wanted to help me with my socks and shoes and doing my hair. He learned to help me up and helped me transfer in and out of my wheelchair as a teen. Now, less than a year out of high school, he is a Certified Nursing Assistant. He works in home health care and travels around the area taking care of clients with traumatic brain injuries, dementia, Parkinson’s, etc. and hospice patients. He loves his job and hopes to go on to get his RN. At 19, he has more empathy and maturity than many much older adults. I used to worry that he was missing out because there were things I couldn’t do, but he tells me I gave him so much that his friends didn’t get, and that he knows how to take care of himself in a way his age-mates don’t. He’s always puzzled by the college age kids who don’t know how to do laundry, or cook, or make coffee, or grocery shop, or manage money–all things he learned by helping me. It sounds to me like you’re a great mom, and your kids are going to be fine. Don’t ever beat yourself up over what you can’t do because of your RA; just love your kids and be there for them in the way you can.

  • Tamara Haag moderator author
    4 years ago

    Wow, thanks so much for sharing this powerful story, Dawn! I know you are extremely proud of your accomplished son. This is very reassuring to hear from a parent “on the other end” of child rearing for whom things not only turned out alright, but turned out amazingly well. Thank you!

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