Saturday, December 19, 2009

The White House Visit

We were invited to a White House Holiday Tour! Which was very, very nice. I has written a letter, actually several, to The white House asking President Obama and Michelle to attend my fundraisers. I asked if they couldn't come could they send me something to raffle off- like a set of White House Towels or something. I never heard an answer not even a form letter so I mailed a letter every week for 2 months. They must love me! Finally I get a response letter saying basically sorry- it's against White House policy to send anything to raffle off. We end up getting a phone call inviting us to The White House. They are trying to give children with medical problems or special needs a treat.
The holiday tour was really nice but really it cost a lot to buy all those train tickets and go to DC in one day was a real pain. It was about 12 hours of traveling for a 45 minute walk through 5 rooms. The kids really won't get this until their older so it wasn't such a treat for them. Then the White House screwed up and my mom ends up not getting in, they lost her information. I was so upset. She came all that way to stand outside the gate, it was so disappointing. My kids were all upset, we couldn't believe it. I saved the email with the white house contact confirming our tour for 7 people, not that it makes a difference. They didn't even apologize.
Also they specify no bags and people were going in with bags. Why bother having rules?

Thursday, December 17, 2009

So Much Going On...

We've had a lot going on. I guess that's life with 4 kids! Throw in NF or any disability/ health problem its a whole different ball game.
Julia was always a really itchy kid. And by itchy I mean rolling on the rug or walls cream never fixes it itchy. I have tried every kind then Julia cries "Why am I still itchy?" I answer "The cream has to sink in, it takes awhile." I don't want to tell her about neuropathy yet. I told Julia there was a medicine but she won't take it. She told me she doesn't want to drink something everyday. I don't blame her. And even thought she's only 7 years old it's her body and her decision. I told her I'd get the medicine and if she's very itchy she can decide if she needs it.
Julia's headaches have recently escalated to migraines. Julia used to get headaches once in awhile after school. She would come home and cry that her head hurt then go to room hide under her pillow and fall asleep. Now she wakes up at all hours 2, 3, 4 am - she calls out "mom, mom I can't move!" I run in and she holds up her head and says "Mom my head hurts I'm going to throw up" I carry her to the bathroom. After a few minutes she asks for an ice pack and my bed. We crawl under the covers, she holds the ice pack on her head and falls asleep. I lay awake. My mind runs. I can't seem to shut off what progressive is going to mean for Julia. If you have migraines that wake you, itchy skin that drives you to stand against points or lay on rug to scratch yourself, how in the world is this going to be when she's 15? or 20? or 30? I know that I should only deal with today. I know I have no control over tomorrow. I just can't help it. I just sort of lay there and wonder and cry softly. I appreciate every moment with all my children. I know I'm only really borrowing them from God, even though though I'm not very religious right now.
It's very hard for me to watch Julia's pain, which compared to other NF children is mild. We know plenty of kids on chemo. I just will never understand why a little girl whose 7 has to get a migraine headache. Or why she itches until she bleeds and feels like she wants to crawl out of her skin. It fill me with anger, watching and trying to manage this pain. It makes my mind churn and my heart hurt. It makes me question every belief and the faith I used to have growing up. It really makes you wonder when you live with this "WHY?" !!!
Although I'm looking forward to so many things and trying to focus on them, this is really some life. I wake up some mornings and as my feet hit the floor, I think "Really? This is real?" It's a lot to digest.