Today was extremely bittersweet. I almost didn't write today, because this morning was so awful. Your feeding tube got pulled out last night while you were tossing and turning in bed from withdrawl and being in pain. So they had to put in a new one and they had to tie your hand and feet to the board so you wouldn't move. You were screaming and so mad. I can't blame you at all. Then I found out that the people who were supposed to pay for your medicines, and our stay at the hospital, and all the stuff we have to do with doctors when we get home, are not going to pay for anything, and that we have very few options left to help you get the medicines you will need and the therapy. So I was pretty upset at people who would do this to us, and at just how cold some people can be. But you woke up from your nap, and were in a great mood, so we went on a wagon ride around the hospital. There was a volunteer who was playing some music in the lobby. So we sat and listened to it. All the sudden I felt so appriciative of that guy. I thought about how he was taking time out of his busy day just to play music for us. That no one was really sitting and listening but us, but he still did it. He didn't get paid to do it, he just did it because he wanted to show his love and concern for complete strangers. Just when I think people can't get any worse, there is someone there to show me that there is good in this world, and though they may not be as loud and in your face as the bad, there is just as much good. I felt a lot of peace, and just knew that something would work out. Money and all that come and go, and that no matter what happens in this world, we will always have eachother for eternity. I hope that I am being like that guy who is in the lobby playing music, and that the world is a little better because I am in it.
Wednesday, June 16, 2010
June 16, 2010
Today was extremely bittersweet. I almost didn't write today, because this morning was so awful. Your feeding tube got pulled out last night while you were tossing and turning in bed from withdrawl and being in pain. So they had to put in a new one and they had to tie your hand and feet to the board so you wouldn't move. You were screaming and so mad. I can't blame you at all. Then I found out that the people who were supposed to pay for your medicines, and our stay at the hospital, and all the stuff we have to do with doctors when we get home, are not going to pay for anything, and that we have very few options left to help you get the medicines you will need and the therapy. So I was pretty upset at people who would do this to us, and at just how cold some people can be. But you woke up from your nap, and were in a great mood, so we went on a wagon ride around the hospital. There was a volunteer who was playing some music in the lobby. So we sat and listened to it. All the sudden I felt so appriciative of that guy. I thought about how he was taking time out of his busy day just to play music for us. That no one was really sitting and listening but us, but he still did it. He didn't get paid to do it, he just did it because he wanted to show his love and concern for complete strangers. Just when I think people can't get any worse, there is someone there to show me that there is good in this world, and though they may not be as loud and in your face as the bad, there is just as much good. I felt a lot of peace, and just knew that something would work out. Money and all that come and go, and that no matter what happens in this world, we will always have eachother for eternity. I hope that I am being like that guy who is in the lobby playing music, and that the world is a little better because I am in it.
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That's one thing I loved when I was there with my son is the piano and the random stranger's that would just come play beautiful music. I'm sorry to hear about the medical bills, maybe there is some way to raise money to help you pay for a little of it. Do you have a place that people can send money to?
ReplyDeletethat is really sweet, but it is more a matter of insurance. We really need insurance. She will be on antibiotics for the rest of her life, and is suseptible to have other complications with infections in the future, so we need to figure out how to get insurance. we are trying now to see if she will qualify for disability. But we have already seen a miracle with her living, so for sure something miraculous can happen with the insurance situation. It is a minor bump in the road that we will eventually get over.
ReplyDeleteHave you looked into Humana for insurance? They carry insurance for children but I'm not sure if they would cover your daughter now or not but it was a thought .. Where in Idaho are you from if you don't mind me asking .. My dad use to work in Yellowpine, Id. .. Your family is in my prayers .. What a littler fighter you have .. she is adorable .. Have you thought of setting up a bank account for people to donate just to help offset some of the costs? Blessings sent to you and your family
ReplyDeleteWe are from Idaho Falls. Thanks for the tip we will look into humana too. Right now we need to exhaust all options, so any imput is really appriciated.
ReplyDelete