Monday, July 26, 2010

Last minute details

I have always been, and most always will be, a procrastinator.  Not something that I'm proud of, but it is a huge part of me.  I'm just now starting to think about things for the trip that I probably should have thought about already. It will be so nice to have some one-on-one time with my little bean-girl, to be able to show her things that I think will amaze her in PA.  I can't wait to see her eyes light up on the plane!  Time to enjoy the heated pool, being away from her siblings, and meeting all of the other kids that are "just like her".  That is so huge.  To know that she's not alone.  Even then, I wonder if she'll be the only one wearing a jacket & mittens?   At least I know that these kids will not make fun of her for it.
I'm a little nervous about having her in her own conference classes.   She still can be a little.... different.  She may insist on staying with me at first.  I hope not.  Not that I don't want her with me, 'cuz I wouldn't mind that at all!  But I really want this to be for HER, and for her to get the maximum benefit out of it.  I hope that she can be comfortable enough with her illness to always tell people about it, educate them and make them aware.  She tells all of the adults that she meets right now, but around other kids she tries to act like it's nothing.  Maybe this experience will help her to be herself more around kids her age, take better care in school.
I really want us both to make some lifetime friends that we can share these crazy ups and downs with.  Up until the "Arthur Itis" Facebook page I felt very alone in this battle.  I didn't really have anyone to turn to outside of the doctor's & nurses.  I was pretty lost trying to figure out how to help, also.  I had no idea where to begin.    Tony from the AF has been an AMAZING force.  He has all of this energy that is just exploding from him, but he's focused enough to channel it and get other people to help.  Seriously, Kevin & I talk about him a lot because he is just awesome.  I am forever grateful to him.  I feel like I've regained something somehow since finding his FB page.  I so wish that he could go to the conference, too.  I know he's content to let the families go, but I will miss him there.  Anyway, I don't think he could ever realize how instrumental he has been in my life.  I hope that I can be that instrumental to someone someday.  Granted, it hasn't been ALL him.  :)  There was God first.  He who brought me to my lowest point only to pick me up, dust me off, strengthen me & then use me for His work.  I feel blessed every day because I know that in some way He is using me.  I know, I'm rambling.  I'm so excited!!!!!  But I'm also very tired from being so excited!  I can't even focus, my mind is a jumble, and yet I attempt to write.  I'm so sorry to anyone that may be reading for the first time.  I'm usually much more put together.  But right now I CAN'T WAIT!!!!!  :)

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