There is a lot of talk about healthcare in the US right now. I get it, I am part of the talk. But I want to warn people of being careful about outright disusing the worth of people. I know in the end that is what health care and part of the conversation we are having right now is about... how much money is worth it to us as a whole to spend on healthcare but that conversation can turn quickly into the value in dollar amounts that we have for a person and that is a dangerous slope to be on.
As a special needs mom I feel like I frequently have to prove my kids worth. I know in talking to other moms like me that I am not the only one who feels this way. I was thinking about this the other day and caught myself thinking "my kids should have the right to healthcare because..." and the blanks were things like the are amazing kids and I was thinking about their qualities and then it hit me that I was justifying their worth too. And we need to stop trying to justify why people are worth anything... we are God's children... end of discussion. It does not matter the economic status, skin color, IQ, physical abilities, location someone was born, ect... if you are a Christian then along side that view needs to come with that thought that everyone matters... period.
No parent should have to defend why their child has worth in this world. Please be careful with your words.
Health update:
Yesterday Jilli had an appointment at Shriners for her leg braces. I don't think he understood how sick she was and how far from baseline she is because she was able to take 5 steps for him. Its kind of a frustrating thing right now because people who have not walked with us before this, during it and since it don't understand it and I think he thought I was exaggerating what all happened and how far she is still off on her PT assessment. He did ask if we have an ortho surgeon in the MDA clinic we will now be seen in at CHW and I told him I don't know since we have not been seen in the clinic yet but after the fact I am kind of confused why he asked. Her SMO needed a slight adjustment on the top of the foot and they were able to do that while we were there. Overall the appointment was quick and we were in and out including registration and check out in less then an hour.
My brother came with us and since we were down in that area and the appointment was so quick we decided to do something down there. We decided to hit up the Lego Discovery Center. It was fine. Jilli enjoyed looking at stuff. She liked the 4D show even though she covered her ears the entire time. I just felt like for the price there was not a ton to do and we were there while the place was basically empty... I could not imagine being there with a crowd. Jilli had a good time and that is what counts but I don't think we will be back. I did let her sit in her wheelchair for it (we have mainly been using carts and stroller since her set back because I have mainly been places by myself with both girls and can not push the stroller and help her in her wheelchair like she needs right now) I would pushed her in stretched that were more then a couple of feet but she would do the little moves. Its a start and she was so proud of herself. By the time we got home she was tired thought (we spent about an hour and a half there) and was in that 4yr old goofy tired.
Today we had a down day which we really needed. I worked on Katie Beckett paperwork some and worked on packing for Disney (in case you missed it I had an article published again this month in Complex Child about oxygen at Disney). A friend came over with dinner which I really appreciate. I am so thankful for the meal train. Jilli played sitting on the floor more today which is a step in the right direction. Another friend stopped over with a Peppa Pig hat for Jilli for when she is in the sun. It was so sweet!
Tomorrow she has zoo class which will give us a better gauge for things at Disney.
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