“Mommy, let’s skip to the car,” my 7-year-old son says.
Grabbing his small hand on one side, and my 5-year-old daughter on the other, we make a chain as we skipped from the store doors to our car, laughing all the way. This was a regular occurrence for us. We felt free and united.
And then my body stopped working.
Raising children while living with chronic illness
In 2004, I was diagnosed with rheumatoid arthritis (RA) right before my son turned 8 and my daughter 6. As my daughter sat on my lap and asked, “Why are your fingers so big?” I worried about what type of mother I was going to become and what type of long-term effects my disease would have on them.
Raising two children while dealing with a chronic illness has required patience, honesty, vulnerability, and the ability to honor the very people they have always been. Right from the beginning, the character of each child came out in their own unique way to support and love me.
My now 21-year-old son has always had the innate ability to remain calm and look at a situation in its entirety. My chronic illness has never been any different. Right away he saw the pain I was in and without ever being asked or told to, he took on the role of doing what he could to make sure I was in as little physical and emotional pain as possible. In fact, the first time he was old enough to stay home alone and not attend a rheumatology appointment with me he asked, “Do you want me to go in case you cry?” He knew me so well and understood that his presence was often all I needed.
For years, my sweet son went grocery shopping with me so he could grab the heavier bags. When we attended group outings, he kept on eye on me. If he saw that I was trying to “help” the group, he immediately stopped playing and ran over to assist me. Throughout his teen years, he never hesitated to bring calm to a day full of pain and anxiety or to watch carefully for when I needed a little extra help with everyday life.
My daughter, now 19, has always been my cheerleader. Soon after my diagnosis, she came up with the idea of charting how I felt each day using what we now call emoticons. One week, I had five smiles in a row. She was the first to notice and insisted we celebrate.
Throughout the years she has reminded me to be cautious of what I eat and cheered me on when I have made positive changes in how I live my life. When she was a senior in high school, the two of us took a weekend trip to Colorado right after a blizzard hit. We chose to go ahead with our plans to visit the Rocky Mountains. As we climbed, I often lost my breath hiking up mounds of snow, but when my daughter said, “Mom, you are almost 50 and have RA. I hope I’m as active as you at your age," my heart melted. Those words will forever be my favorite part of the trip and my inspiration as I go about the rest of my life. Despite my chronic illness, my young adult daughter was still proud of me.
Let them help
Children see our pain whether we want them to or not. They also want to take away the pain, but they can’t. What they can do is help us in ways that only they know how. Give them room to be who they need to be. Each of us is different and how we help those in pain needs to align with who we are as people, no matter what the age.
Over the years my children have helped me undress, saved me from the bathtub when I couldn’t get up, held me as I wept in pain, and made me laugh when all I wanted to do was cry.
As parents, we want to do our best. We want to be the protectors and the cheerleaders for our children. But guess what? They have those same traits built into their personalities. By sharing those traits with the person they love most in the world, they feel empowered and needed. The bonus is that as they become adults, those very traits they shared with you are felt by their friends, co-workers, and even strangers.
I often hear both my children saying, “You never know what a person is going through.” Growing up with a mom who has a chronic illness, both of my children have learned to never assume anything about a person. They both tend to always look a little farther than what meets the eye.
Time is a gift
During the early years of my chronic illness, everything in my life felt foreign, even how to be a good mother. However, time has been a gift. As I look back, I realize I missed out on some fun family activities, but overall, I have tons of memories snuggling together with my children with a good book, crying together over a hard day, or laughing at the silliest things with my children. Pain didn’t stop me from encouraging my children to be good people, from teaching them empathy for others, from being support of them, too, or of helping them with life decisions. My chronic illness didn’t stop my children from growing up with pleasant memories of me, feeling loved, and knowing that I am always here to support them. Honestly, I can’t ask for much more than that as a mother.
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Cathy Kramer shares her positive voice as an advocate in the rheumatoid arthritis, chronic illness, and self-care communities. Her ongoing journey with RA can be found on her blog The Life and Adventures of Cateepoo. She often hangs out @cateepoo88 on Twitter, Instagram, and Facebook. Watch her story on HealthCentral.