Ok here is one where I pour my heart out to you. I'm going crazy with all this stuff with transplant. I thought things were settling down here with all of that. Just when I thought, in my mind, I get my frame of mind straight or as straight as mine can really be about doing things in Cincinnati, I get an e-mail tonight at like 8:45 from Dr W in Minnesota that states the following
Maybe we can talk next week. We need to try something else about coming here. I think the world of Stella Davies but I still feel we shouldn't give up yet. J
Grant it I was very excited to get this e-mail, because I have NEVER stopped praying for Minnesota. Minneapolis IS where we want to be. Dr Davies in Cincinnati is a really great and concerned doctor, and the hospital was nice too. But it's so hard to explain there is just a feeling that you have to have. As a mom, you just know what is right for you kids, I know this in my heart and in my stomach. I know that God is in ultimate control and His will shall be done no matter where you are. I'm also looking at comfort for the rest of the family, I know that her care is of the ut most importance and well I truly and have always truly felt that Minnesota is where she is going to get that, but with all this stupid insurance and crap, there just seemed to be no way around it all. Minnesota is truly our home away from home and even though there IS no place like home....for us it is as close as we can get with all the friends that we have made there and well truth be told the Ronald McDonald House there ROCKS!! From the staff to quality to the comfort it really is a home away from home, warm and inviting. The one in Cincinnati, just seemed so cold and sterile....
I'm just so confused and don't want to get my hopes up again to have them burned down again.
I hate FA, I hate that I have to make choices of care for my kids, I hate that they have to go through a bone marrow transplant that is NOT 100% guaranteed to work! and most of all I hate that my child/children may die way too damn young...to damn friggin' young to ever truly experience life!!! I don't want a pity party, but I have been so strong for so long that I just have to let it out and right now this is the only place that I can seem to do it, I wanna go out side and just scream till it hurts. I want to ride the damn horse not just keep climbing up and falling off the SOB!!!!!!
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No need to explain the "feeling" Minnesota has to we FAmilies that have transplanted there. It just feels RIGHT. As scary as transplant is, you know you're in the right place. I hate that you're on a roller coaster with the "will we" or "won't we" be in Minny. I wish it were easier. I wish FA were easier. I wish that our children could benefit from research and enjoy a long life. I want to scream along with you. I want to slap people who think that the end of the world is near when their child didn't make Allstars, or Cheerleader, get in honors classes, or their perfect world is marred by insignificant BS. I just want a HEALTHY child, with or without flaws, a child who can live life without my wondering what harm is being done to him with every procedure that racks his body. A world where he can give me grandchildren and then live to see them grow up. I want to know that what ever care he needs will be given to him regardless of Insurance woes. I want PEACE, for you and me, and the other FA families that deal with this daily. I want Amelia to not have this hanging over her head, controlling her life. I want the bureaucratic honchos to feel what we feel living in this world! Good luck and we are praying for GODs perfect will to be done for Amelia!
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