When I was a nanny in college, I vowed that when the day came when I had kids of my own, I would be a fun mom. I would be stern when necessary, but I would also be playful and silly. I would actively play with my kids, hang from the monkey bars with them, and do all the fun things that I did with the children I babysat that endeared me so to the kids and their parents alike. I would be a rock star when it came to mothering.
RA and Parenthood
Shooting ahead 17 years later, I am now a mother of two small children. While I have my shortcomings, as all humans do, I will say that overall I am a good mother, and I certainly put a lot of effort and intention into being the best mother that I can be. That being said, I am no diva when it comes to parenting, and I’ve fallen short of that image I predicted for myself all those years ago. Of course, we are all full of energy and idealism in our late teens and early twenties, so age (and reality) does mellow our expectations over time. While age has played its part in the difference between the mother I’d hoped I’d be and the mother I am (few thirty-somethings have the energy to play on jungle gyms that 20 year olds do), the most frustrating limitation I face is my RA.
Rheumatoid arthritis frequently pokes up its ugly little head during my quality time with my kids. On a good day, I can give them “airplane rides,” where I lie on my back and use my legs to hoist one of them up in the air with his/her belly resting on the soles of my feet. They absolutely love it, and I am grateful when my joints are doing well enough to handle this activity. That being said, gratitude for the good days doesn’t prevent the sadness I feel when they say, “Mommy, can I have an airplane ride?” and I have to tell them that my bones are sick and don’t feel well enough to give them a ride today. This also happens with swinging them through the air. They each love to walk between my husband and me, putting one hand in mine and the other hand in my husband’s, and having us swing him/her through the air on the count of “one, two, three, whee!” Just like with airplane rides, I can handle doing this two or three times if I’m having a really good day. However, most days it is too big a strain on my wrists, fingers, elbows, and shoulders. I hate having to turn down their pleas to be swung. They can jar my heart with a “please Mommy?” that I can’t meet with a granted request.
Explaining RA to Children
It is hard to try to explain to a two year old that some days my body can perform an action and other days it can’t. It is also confusing to them that there are some very simple things that my body can’t do at all. My four year old daughter likes to “dance” by standing with her feet on top of an adult’s feet so that each time the grown up raises a foot off the ground, her foot is raised as well. I used to do the same thing with my father when I was a little girl, and watching her do this with others fills me with nostalgia. However, my tender, swollen toes and bunions scream in protest any time she attempts to stand on my feet. She is confused when I yelp in pain when she does something that is greeted with a smile by her father or grandparent.
While it is hard to tell my children that I can’t do these fun things with them, I realize that learning to cope with disappointment is a very important life skill, and I would rather raise my children to be compassionate and respond to disappointment with grace than to always give them everything they want. Yet, I have a much easier time refusing them ice cream or screen time than I have in refusing to give them part of myself.
Far worse though is the impact RA can have on my mood. When I am in a flare, my patience seems to evaporate and I can become incredibly irritable. There may be no use crying over spilled milk, but when my hips are in agony the pain of getting down on the floor with a rag and some cleaning spray can in fact bring me to tears. On a good day, I can respond to my children’s cries over a toy they are squabbling over with problem solving skills, saying things like, “We don’t snatch things out of people’s hands. If you want a turn with the toy, say, ‘Can I please have a turn?’ and then wait patiently and in three minutes it will be your turn.” But on a bad day, I’m liable to holler, “Knock it off!” instead. About a week ago I spent some time cleaning the living room in spite of being in a good deal of pain. Ten minutes after I had the room picked up, my two year old dumped a jar of tiny beads all over the rug, then dumped a container of miniature rubber bands over the beads. My living room floor went from clean to chaotic in less than 10 seconds. My heart sank, and I felt overwhelmed by the combination of physical pain and messy landscape. I made repeated requests that he pick up all the beads and rubber bands, but he only laughed or ignored me each time I spoke. Cranky and spent, I ended up yelling at him, which made him cry. As the tears welled up in my toddler’s eyes, I immediately regretted that I’d let my flare get the best of me.
This “mean mommy” aspect of living with RA is one of the most emotionally painful challenges I contend with. All living creatures react differently when they are in pain than when they are well (a dog licking a wound is likely to snap at you if you come too close). I try to tell myself that I am human, that I make mistakes, and that acknowledging my mistakes and apologizing to my children for them is modeling an important skill. Yet in my heart, I feel like a terrible mother, the polar opposite of the rock star mom I’d dreamed of being. Most people think that arthritis only affects bones. Doctors and researchers are aware that it can also affect tendons, ligaments, muscles and organs, and in some rare cases, even the heart. Mothers with arthritis know that the effects of the disease are even farther reaching, impacting our symbolic hearts as we feel them breaking when RA keeps us from being the moms (or dads or grandparents) that we want to be.