Many who read this blog know all about Trina. But there are some in my life now who might not even know who she was. I read a post today on my favorite blog, Under the Sycamore. To briefly explain it is about a project to help prevent parents having to give up their child because they cannot afford to pay for medical care for them. I am very aware of how this works. My first husband and I were fortunate to not have to totally give up Trina, but I understand being in that place.
Trina was born in 1978 at 28 weeks gestation, and weighed 2lb 7oz. She had numerous struggles in her life which I won’t go into. But there came a time when she was just too much to care for at home without help. It wasn’t that we didn’t want her, it was just too much to handle alone. We were living on active duty military pay miles away from family, we couldn’t afford to hire help, let alone purchase all the equipment necessary to properly take care of her. And to top it off because we were military, at that time we were not eligible for low income assistance. She was 7 years old, and there was a special school in Wyoming (about 5 hours drive from us) that she could go to. It was run just like a boarding school, and she could come home for breaks and the summer. It was great. But, to make a long story short, we had to release our rights to her so the state could take care of her. As I mentioned before we were fortunate. This was because we lived in Wyoming where she was still considered our child by the people caring for her.
Trina was about 13 years old when the government decided to move her out of the school. They wanted school-age children moved into their school districts. She was placed into a private home with a very nice lady who was assigned to be her primary caretaker. This home was completely upgraded with all the equipment needed to care for Trina. They widened doorways, installed a special bathing bed. They also constructed a ramp into the house, as well as the relief caretaker’s house (where she went to on weekends). They also assigned aides to come daily to the homes and assist the caretakers with feeding, bathing, therapy etc. There were also therapists, caseworkers, advocates, and county employees who came to the homes on a regular basis. On top of this she attended public school, so had to get up and be fed, dressed and ready to be picked up by the bus at 6:45am.
Trina came to us every Friday for the night when the school bus would drop her off. There were stairs up and into our house. I had a small ramp for the outside, but no way to get her into the house. So I would have to take her out of her chair and carry her up the stairs. Then wait for someone to get home and help get the chair in. We had no special bathing equipment, only what we could jerry-rig or invent ourselves. The system would not give us any help at all.
Instead of helping us by installing a ramp, helping with a bathing chair, and giving us an aide a few times a week, they spent thousands and thousands of dollars to do it redundantly in other homes, paid salaries for many people, and put Trina through all the stress of traveling around to multiple places. This endless moving around, numerous people in and out all day, and the constant activity was just too much for her. Her system just couldn’t deal with all that activity and stimulation, so little-by-little she shut down. Just before her 16th birthday she passed away – she’d had enough.
So when I read the article this morning it made me very sad to realize it hasn’t changed. In fact, I wouldn’t be surprised if it is worse now than it was for us then. I also know it isn’t just with children, but also with the elderly, and others. There are so many decisions made that are not made by people with all the facts. Assumptions are made, and a lack of knowledge or even a basic understanding of what it is like. They say “you can’t fight Capitol Hill”. Grant it, I have just learned about the organization, but it looks to me like the Morning Star Foundation and The Love Project have found a work-around that is working. I applaud them, and all the people supporting them.