Today was a great day. I kept wondering if I should go to church or rest, so today I went. Threw on a shirt and thought it really doesn't look my best, but oh well! Off we went! And then we were there and everyone said hello. Everyone wanted to help if I wanted to be pushed in my walker. Anf if I didn't, that was respected as well. Then there was the sermon and I don't remember most of it, but I do remember the pastor saying the times when you don't feel your best are the times you should get to church. Then I knew I was in the right place and it felt like home.
This afternoon I went to a graduation party for someone at my church. They opened part of their fence, had me drive up it, onto their lawn, and then wheeled me up and into their house. It was so awesome. And I didn't have to ask--they just knew.
And why is that? When I don't ask, people know--it's certain people. When I do ask (the 1 time--see below), I am told no. I saw a quote from Gandhi recently: "First they ignore you, then they laugh at you, then they fight you, then you win." It's not about winning, but I like the quote. What I like better is not having to be ignored or laughed at, and not having to fight. What I like is what happened today--beautiful people helping because they just do--they care.
Thanks be to God for those people who care.
Sunday, May 24, 2009
Friday, May 8, 2009
Helpless
MS is exhausting. It's been an exhausting week. And it has ended with an answer from my daughter's school that they will not help me. No way. Nope. Not going to happen. Never.
When I have an MS attack, or a bad MS day, I am stranded at home. I'm exhausted. I may not be able to walk or even stand. The last thing I should do is attempt to leave the house to pick my daughter up. So I have her take the bus. Then the neighbors can help her get home. But we're in year-round school, so the neighbors are not always home. I requested my daughter be put on the same schedule as the neighbors so there would always be someone there for her. I was told my request doesn't fall under the ADA (but it does) in a letter today. And then I fell apart.
It seems no one cares about our safety. It seems no one even wants to understand this disease. It seems no one realizes the uncertainty MS brings to one's life. It seems no one cares if I am lying on the floor of my garage unable to move, and my daughter is who knows where. And no on wants to help.
Who can help? I've now contacted the Colorado Cross Disability Coalition and the MS Society. I sent an email to the department of education (federal). I put a post on Facebook. I was having so much fun (not really) that I also sent an email to the president and my 2 state senators. And will anyone help? I am very much doubting it.
Can God help? How?
When I have an MS attack, or a bad MS day, I am stranded at home. I'm exhausted. I may not be able to walk or even stand. The last thing I should do is attempt to leave the house to pick my daughter up. So I have her take the bus. Then the neighbors can help her get home. But we're in year-round school, so the neighbors are not always home. I requested my daughter be put on the same schedule as the neighbors so there would always be someone there for her. I was told my request doesn't fall under the ADA (but it does) in a letter today. And then I fell apart.
It seems no one cares about our safety. It seems no one even wants to understand this disease. It seems no one realizes the uncertainty MS brings to one's life. It seems no one cares if I am lying on the floor of my garage unable to move, and my daughter is who knows where. And no on wants to help.
Who can help? I've now contacted the Colorado Cross Disability Coalition and the MS Society. I sent an email to the department of education (federal). I put a post on Facebook. I was having so much fun (not really) that I also sent an email to the president and my 2 state senators. And will anyone help? I am very much doubting it.
Can God help? How?
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