Hope for the Next Generation

Sorry things have been quiet around here lately - just very busy with the holiday season.  We spent this weekend with my mom, her husband, and my sister and her family, with our traditional early Christmas celebration (plus two birthday celebrations).  It was lots of fun and great to see everyone.  I felt so much better than I did last year at this time - I was really just filled with joy at being able to enjoy my family and help a bit with meals.

Mostly, I had a blast playing with my niece and nephew (that's a photo of my mom with her four grandkids).  My nephew loved playing with the race car set we got him, and I had fun playing games with my niece and the rest of my family.  My 5-year old nephew wanted to learn to play jacks (I have retained my elementary school skills!), but he didn't really have the dexterity for it, so he came up with a new way to play - he threw the ball up and scooped up as many jacks as he could, while it was up to me to catch the ball!

At one point, I was out on the playground/beach area (my mom and her husband live in a resort community) with my mom and my niece, and my niece (who is 9) asked me about the heart rate monitor I was wearing.  That sparked a conversation about my illness that left me feeling really good.  I prefer to be very open and upfront about my illness, and I believe it is really important to be honest with kids (at a level they can understand, of course).  Kids can sense when something is wrong, and NOT talking about it just makes them feel more worried and scared. 

My sister, on the other hand, is one of the only people left in my family who doesn't really acknowledge my illness.  I can remember her asking me once in the past 10 years how I was doing - she just prefers to pretend everything is fine.  Once when my nephew asked about all the pills the kids and I were taking, my sister jumped in and said, "Those are vitamins."  I thought that was a rather dangerous thing to tell a little kid, that it's OK to take a dozen vitamins at once!  So, I explained that we had an illness, and our doctor gave us medicine to help us feel better.  I emphasized that we only take medicines that our doctors give us.

So, this weekend, when my niece asked me about my heart rate monitor, I said, "Well, you know that I have an illness, right?  Well, watching my heart rate helps me to keep from getting sicker.  If I keep it below a certain point, then I feel better.  So, this heart rate monitor helps me to be able to play more with you without worrying about it making me sick!" 

She was glad to hear that and told me that she'd learned about Lou Gehrig's disease in school.  So , I reassured her that my illness doesn't usually kill people, and that medicines help me feel better, and we talked about the differences between Lou Gehrig's disease and my illness.  She was fascinated by the heart rate monitor.  We had a great time playing on the playground equipment and taking a short walk together.

I think it's so important to talk to kids about our illnesses.  They're the next generation!  I usually reassure kids about the two things they are likely to worry about most: that this isn't the kind of illness you die from (I know that technically, some have died from CFS but mine is fairly well-controlled) and that it's not the kind of illness you can catch from me (again, I know that technically we don't yet understand the infectious component of CFS but we do know it is not passed along by casual contact - otherwise, a lot more people would have CFS). Maybe with some education and honesty, there will be less ignorance and more understanding in the coming decades.  My sweet niece and nephew (and my own kids and their friends) give me hope!