I wrote my first blog March 26, 2008. It has been nearly a year, and much has happened. I don’t feel very happy today. Not only is it raining, but one of my best friends, who was suppose to come today, didn’t. She is home sick.
I try to imagine what I would be like if I didn’t have my disability. I imagine I would have a busy life. It would be full of school and learning, and friends, and school breaks where I get to go to warm places. A car of my own. Interesting activities. Food of my choosing, without limitations. Easy access to family and friends through email, and cell phones, and texting. Independent of my Mom’s support. I would have energy for my own personal interests, which I am sure would be many. I may even be married by now.
I hear other women, who are in my life because they help meet my needs, talking about their lives. They try to fit me into their busyness. My needs require energy and willingness. Many times I need extra help to even eat and drink.
If you have read other blog entries I have written, you will know that most days I am content. Today, I am grieving. I am sad for me, my Mom and step-dad. We have had four people who I am dependent on to even live, cause us great grief and stress in the past week. They are just meeting their needs. They want us to be undestanding, and accomodate them. It is a simple request. If it was just one, on occasion, it wouldn’t be so devestating. But to have four in a row, not fulfill their promises, is devestating. I can think of no other word.
If my life were full of what it could be, or I was a typical person, these little setbacks wouldn’t be so disappointing. I look forward to what would be so simple to others, with great anticipation and excitement. Most people don’t mean to be hurtful, but since I can’t go to them, or pick up the phone and call, I am left to their thoughtfulness. It is often lacking.
Most people expect that my Mom will just keep on doing whatever it takes to meet my needs and that if it doesn’t work out for them to come, it isn’t a big deal. What they don’t know is how incredibly hard she works everyday to meet my needs, and sacrifices so many things about her own life in order to give me a life of value. When people expect her to pick up their lack, it takes away from the very little time she has to relax, let alone leave and go for a walk by herself. She gets so weary and because she’s my Mom, she keeps going no matter how exhausted she is. Because I cannot live without care, this is so painful for me. I hurt inside, seeing how much sacrifice she makes for me. In addition to that, my step-dad has been taking time from his work to help us. I love him for it and yet it’s not the life any of us deserve. When people who we are counting on, don’t respect how much of a burden they place on my family when they are inconsistent, causes me so much grief. It makes me weary of living.
My sister has moved far away. I rarely see her and I miss her. I hate to feel like my life is just a burden to others. That meeting my needs is just a paycheck to people, and yet the only people I see besides my Mom and step-dad everyday, are those who are paid to be here. That is more than I can take.