This past week, World MS Day was observed. It is a day when many countries send out information via various platforms to help raise awareness of Multiple Sclerosis, as well as helping the general public to understand what MS is.
Our oldest daughter, Anna, was diagnosed with MS at age 13. When many girls at school were worried about their middle school homecoming outfits, Anna was having MRIs, spinal taps, and numerous blood draws. Her MS was very aggressive, as it is for many of the children diagnosed with this disease. That meant we needed to spend a lot of time in doctor’s offices, outpatient infusion centers where she received steroid treatments to calm her relapses, and had to make modifications on some activities at home. She took a lot of our time and attention, which meant her two sisters felt a little left out at times.
A few years later, Jonathan was also diagnosed with MS. We haven’t spent as much time in doctor’s offices as we did with Anna, but his disease has caused a change in the way we live at times.
It wasn’t until Laura, our youngest, was in a college psychology class and wrote a paper about shadow children that I realized the affect that chronic illness has on the rest of the family. I believe that sometimes, when you are living it, it is more difficult to see the changes in the “healthy” family members. We didn’t intentionally pay more attention to Anna, and we didn’t mean to make them feel as if their issues weren’t important…but yet, that is what they have sort of felt. Both Christina and Laura have assured me that they don’t hate me (whew!), and now when they are older they understand that living in the shadow of a disease wasn’t something we wished for them.
One thing that I have learned from Laura is to value the time spent with your family members. I love spending intentional time together with each of my kids, where we can have fun, be serious, laugh, or cry together. While we can’t change the past, hopefully others can learn from our experience.
Check in with the family members of those living with a chronic disease. Ask how they are doing. Grab a cup of coffee, or go for a walk…something that is normal and mundane may be exactly what they need. Just don’t forget about them.
