My son (almost 7) and I have been making our summer vacation plans with my niece (6) and nephew (10). My niece was very vocal about how we had planned to do a few things last summer but our plans fell through more than once. It was true. I had promised that we’d go back to Lake Geneva and we never did. I vaguely mentioned a water park, and then we just never went. It was an epically frustrating summer for me, but I tried to make things as fun as possible for them all… but… kids never forget broken promises. I figured I owed them all an explanation and at the very least a warning about making plans with me.
My son has walked in on me making my Fibro Pain Art a few times and seemed to “get it”. He’s said “I don’t ever want my back to feel like that, Momma” and then would offer to rub my back. We’ve had talks about how my body hurts and feels things differently than other people, and even how my brain works differently. Sometimes, he is very insightful for 6 1/2. Other times, he has no recollection of the fact that Mommy’s body hurts and just mows me over with elbows and knees and toes. Which is probably normal for his age. Hell on my body, but normal.
I’ve mentioned Fibromyalgia to my nieces and nephew. My nephew, the oldest, seems to get it. He asks pretty insightful questions and has a very rational reaction to rescheduling/canceling outings. However, he’s 10 going on 42 and has always been a bit of an old soul. When he was 3 we were discussing the meaning of “sacrifice” because of Optimus Prime sacrificing himself at the end of the Transformer movie, and he understood the concept. He’s a bit…advanced. His sister, on the other hand (the one who hasn’t forgotten my last year’s promises) is only appropriately 6, and my other two nieces are appropriately 6 and 8.
In searching for a better way to prepare them for this summer, I realized that I never really explained that the worst thing about my Fibro is how it makes me very unpredictable. And then I realized that maybe the problem is that I’m still trying to be predictable when I know it is impossible for me.
So, I simply broke it down like this: I love you all and I want to do fun things with you. But, not every day is an “active” day for me because of my Fibromyalgia. We can still have fun on the days that I have a lot of pain and need to rest, but we will do it here in the house and backyard. When I feel great and have the energy, we will pick one of the things that you guys have wanted to do and just go do it. We might not get a lot of warning, we might not make a plan for a certain day – we will probably just go when it is a good day. We might not get to do all of the things we wanted, but we can probably do a lot of them. And that’s better than none of them, right?
And everyone agreed.
And I felt great!
But then a few days later my son decided to hang from my neck twice in a row (once, then again after being told no), and hanging from my neck is *forbidden*. I yelled at him (so much guilt!). I told him I was sick and he could not do things like that to me or I will end up in the ER (completely true, but possibly too harsh). And of course he started to cry, but not because I had yelled or said I’d have to go to the ER – which surprised me. He cried and asked me “If you are sick, does that mean it’s going to make you die?”
And there you have it. Explaining Fibro to a child is just so, so, so difficult. Sometimes it seems like they totally get it and then the next minute they have no clue, and then the very next they misunderstand and think it may kill you. We had a long talk that night and besides reassuring him that my Fibro was not going to kill me, I really got a better understanding of how my child views my Fibromyalgia as well as sickness/illness in general.
In the end I learned that I come across quite functional and pretty awesome to him (and probably to my nieces and nephew as well), so for him to really understand how badly my body hurts and my limits is possibly impossible right now. And to be honest, I don’t need him to know how I feel every day. I need him to know that he is loved and cared for, protected and safe.
And… not to ever, ever, ever, ever hang from Mommy’s neck. Ever. Lol.
Sorting out what is important and what is just too much for them is really hard, and I’ve been working with children for 16 years.
But, to be honest, what is even more difficult is admitting to myself that I am no longer that person that can make plans or just casually mention that “we will do this”. That girl is gone. And I have to move on for the benefit of everyone.
And THAT is totally possible.