We see ourselves with these illness’. We try to come to terms with it/them. Eventually we learn to live with it. But what about our children? How do they learn to live with it, or even understand it? Should they ‘get it’ by a certain age? Should they learn to deal with it?
Yesterday was one of those dayz I was reminded, yet again, about my dis-ease! Ashley had a spaghetti dinner to go to for band. Roger had forgotten something at work and headed back home. I told him just stay home. What a waste to drive back (60 miles) again. He said ok he would. So, I told Ashley that dad was staying home. She got very excited and said that way he could drive her to the dinner. [I prefer not driving and do not drive at night anymore] When dad got home he said he had to go back as they were really busy right now. I was a bit irritated as I had told Ash he would drive her.
Well, when she got home and I told her what happened, she lost it. It was all my fault, now how could she go, she told them she was going to be there, why can’t I be like other moms, good moms drive and take their kids places, it’s my fault she never gets to go anywhere cause i’m an ms freak, etc, etc, etc. These are things I already feel about me daily. They have lost out on so many things thanks to my MS. But, it is not my fault!! I told her to call and maybe a friend’s mom could take her with them. She said NO, that is so embarrassing, no one needs to know about me being sick. blah blah blah. The girl that was going to take her was doing something else, and now thanks to me, she would miss this.
I sat there for a while, listening to her, quietly crying. I cannot imagine having a mom sick. I remember being embarrassed by my parents at times in my teenage years. It happens. I cannot imagine how hard it is having a mom in a wheelchair. So, I let them vent, let them yell, etc. They have all had their ‘moments’ of frustration towards me. I let them get it out. Does it hurt to very core of my being? YES! But, I cannot stress over it too much or I will get myself sick, literally. So, again, I let them vent.
My anger, is towards the disease that has taken me from my family piece by piece. Now, she did get punished for this once she got it all out. Even though I understand their own frustrations, there is never a time for blatant disrespect! I think as someone with a chronic illness we have to ALWAYS remember, it affects all around us as well. That’s not to say my heart does not break, but so does theirs.
So, how do we cope and help those around us to cope? After 12+ years I should be a pro at this, but not so much!!
Blessings and Hope!!