I have the most amazing children! I knew they were amazing children before rheumatoid arthritis became a part of our lives, but once it did, I understood completely how amazing they really are. They give me the strength and encouragement to get up each and every day.
My children were six and eight years old (now 13 and 15) when I was diagnosed with rheumatoid arthritis. They were both at an age when I loved to play outside with them running, skipping, swinging, and bike riding. I loved to sit on the floor and play dolls or Lego's for extended periods of time. My time with my children was my main source of happiness. I felt good being actively involved in their lives both mentally and physically.
Life changed for my family when the symptoms of rheumatoid arthritis came. My symptoms came on strong and fast. Within six months I went from first noticing symptoms to barely walking. I struggled not only physically, but also mentally as I had to stop being a physically active mom and as I dealt with the fears of my children, one of which was that I would die.
What I decided early on was that I would explain to my children what rheumatoid arthritis was and get input from them on how we were going to deal with it. By including them in the decision making and allowing them to help, their fears were controlled and the need to "do something" was satisfied.
The roles my children have taken in my rheumatoid arthritis have been very different. For my daughter, she has been my positive strength. When I am in the middle of a flare, she will remind me of all the good days I have had. She has encouraged me to maintain a gluten, dairy, and sugar free diet. In fact, as a six year old she stood in front of me and prevented me from eating bread full of gluten because she saw that as a determinant in my inflammation. Along with my husband and son, she attended family appointments with my naturopath early in my diagnosis and now follows a pretty clean diet herself. From my diagnosis, she learned early in life that food does cause inflammation in the body and we have to avoid certain foods. It is nice sharing a diet of meat, veggies and fruits with her. She has made calendars with sad and happy faces to track my progress. She was the first to notice when I had a full week of happy faces. That is how she is. She focuses on the positive and ignores the negative. This has been a very important lesson I have learned from my daughter during my life with rheumatoid arthritis.
For my son, he has always been my protector. He is quiet with his words but will often come to me with hugs just as I need them. When he was old enough to stay home alone, he still went with me to appointments with my rheumatologist in case I cried. He watches out for me when we are in public. I often find him beside me lifting grocery bags, lunch bags, or anything else before I even ask. This support has prevented many situations where I didn't have to explain my rheumatoid arthritis and inability to help lift heavy objects. When the Enbrel nurse came out to our house, my son sat in so that he knows how to give me injections if my fingers should ever not allow me to do it myself. He even sat with me the first month I gave my injections remembering each detail given to us by the nurse.
Both of my children have helped me undress when my shoulder has been frozen. They have both helped with dinner from an early age. They have both sat with me during flares, just being a source of positive energy. I have never worried that they are being exposed to too much because I have seen their empathic side, I have seen their individual personalities come out to help in just the way that fits who they are, and mostly I have seen that even though my body has changed and times can be hard, we are still enjoying life together.
Several years ago I couldn't get out of the bathtub and needed help. My husband was at work. My son came in to help me but he wasn't strong enough. As he pulled and I yelled out in pain, we found ourselves laughing uncontrollably. The rest of the day we found ourselves looking at each other and just laughing. We thought it would make a great skit for Saturday Night Live. Another time when I was feeling well I was showing off skipping on and off the porch while my family sat watching and waiting for me in the car. I tripped and fell during the show. I wasn't hurt, but we had the greatest laugh over it and that fact that I was being a "show-off". What we have done as a family is taken something difficult and made it a family event with both the sorrow and the laughter.
My advice to moms and dads with rheumatoid arthritis is to include your children. They know us well. They know when something is wrong and when we don't provide them with adequate information, they create what is happening in their own mind and sometimes that can be scarier than what is actually happening. Also, let your children help you. They often feel helpless watching their parent in pain and anything they can do to help makes them feel better. Plus, who knows, you may end up having more laughs than tears and that is never a bad thing, especially when you are dealing with rheumatoid arthritis.
Happy Mother's Day to all the struggling with the pain of rheumatoid arthritis. Enjoy your special day and embrace the wonderful gifts you have given to this world and to yourself - your children! Despite the pain and frustration that comes from this disease, we are truly lucky to be moms.
Published On: May 05, 2011