Family matters

I love my family. Both on my side and on hubby’s side. My siblings and I get along so well they are like my best friends. My mother and I have always been close as well. Hubby’s parents have always been wonderful to me. I can go on and on. There is one problem that spreads throughout both families though. Ignorance. They know about K, B’s and even my diagnosis, but it seems no one knows anything about the disabilities themselves. And because they don’t know the information, and they don’t have to deal with it on a daily basis, there is no way they will ever understand. I get the odd question about how I handle certain things, and if I had a $1 for every time someone says “I don’t know how you do it” I would be a very rich woman.
I don’t even know how I do it sometimes. I do it because I love my children. But it does get very hard at times. All parents need a break from time to time just to recharge and have some fun, and most people turn to sisters, brothers, parents and friends to watch their children. I babysit for my nieces and nephews all the time. Some of them watched K when he was a baby but as he grew so did the excuses. I gave up asking a long time ago and had to rely on S to watch his little brother if I was busy or if hubby and I needed to go out. If hubby and I wanted a date night we had to plan it for when K was at respite. If we were invited anywhere we could only go if K was at respite. Vacation? Respite. Life. Respite.
The friends I have met raising children with SNs have the same complaint. We write blog after blog trying to get people to understand, not for sympathy but for awareness! But unless they are going through it themselves, no amount of blogging will ever get them to understand. But even though they don’t understand, it doesn’t stop them from making comments. I’m sure they think they are making suggestions with the best of intentions but it just makes things worse. Gossip can’t be stopped within families and I hear what some family members say about me. I have been called lazy, inattentive, that I should have done more when they were young, that I am using my own illness as a crutch! I am sure some of my readers can relate to some of that. The problem is my family doesn’t read my blogs. Most of my readers are parents of kids with SNs. I have sent the links but they never leave comments. I mention I blog but they never tell me they read them. It just seems to me that if they don’t have to deal with it they don’t want to know about it. That seems true for a lot of people though. And that is very sad.

P.

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