Barb, I just read your latest blog through streaming tears. It was beautiful and you have a beautiful daughter.
How timely too! This is the second time tonight I have been prompted to take a closer look at how scleroderma has affected my family.
No matter how hard I try to carry on as if scleroderma isn't a factor in my life, or in the lives of my boys, it is there. It will always be there and it does change their lives too because it changes the way I parent my children.
If I had a dime for everytime I have broken the golden rule of parenting, BE CONSISTENT, I could get out of debt. Hard to be consistent when living with a disease where you never now from one day to the next how you will be feeling. When I am feeling good, I feel in control. When I am not feeling good, I let my boys get away with stuff because I am too tired to fight about it.
I also wonder what messages I am sending them when I let my bedroom become messier than theirs because my bedroom is my last priority in the house. How can I look them in the face and say, "Clean your room."?
How can I sit on my 'lazy' rear and let the recycling and the laundry pile up and the yard go untouched and let the refrigerator go bare and eat out all the time because I am too tired to grocery shop and cook and clean the kitchen? This is not how I want my boys to be raised nor how I want them to turn out as adults.
I constantly ask myself, am I really doing the best I can? Can I do better? At what expense?
As for how Scleroderma has affected my friends and family, well I cannot say other than I know that they must worry. And I know that they have really been there for me when I needed it the most.
My boys are still so young and my scleroderma is not visable to them so if you asked them how my scleroderma has affected their lives, my six year old would say, what is scleroderma? My 10 year old would have plenty to say about my parenting, I'm sure, but would not attribute any of it to scleroderma. Maybe I shouldn't either?