Thursday, January 14, 2010

Multiply by 10's

Our rough week is getting better. Julia has stopped crying and is asking me tons of questions- which is fine. I never could have dreamt up or predicted this was coming and at only 7 years old. I really thought Julia's innocent childhood would go on for a little longer.
Julia asks all sorts of things "Will I need the medicine that makes my hair fall out?" , "Am I going to stay at the hospital?" , "Will I have NF when I get married?" and on and on...

I feel physical pain when she asks each question. It makes my heart twist and my stomach lurch. I'm trying very hard to just be matter of fact- and say things like "I hope not honey- that's why we are working so hard to raise money. That money helps the doctors to fix NF and make medicines." or " We have to focus on everything positive, smile!" or " Julia- you will be fine." I keep trying to smile and stick to the regular routine, not easy.

And then I think that going to all these appointments and doctors- which are a necessity and have been invaluable- have cost my children their carefree days. No matter how much family fun we have or vacations we take- its different. Sloan Kettering is a fabulous, her doctors there are amazing, but taking your child their is awful. Sitting on the 9th floor in the peds play room with her coloring watching all the children that are going through so much more is heartbreaking. Knowing that we are only a fine line away from that is another reality that physically pains us.
I've been struggling with all the "regular" things kids go through- like being left out or not being invited to a favorite friends house or missing a birthday party. I can't escape NF. It is different- through my vision of Julia there is always that edge- It's always there, always gnawing at me. If she didn't have NF how different would her life be or how much would remain the same? Its a strange and useless though. I just can never see it without NF, even though it's stuff every child goes through. I think I partly think Julia and children that have issues should be excused- they have enough. So why aren't they just invited to the party or the play date or whatever it is? It's just awful. I know you can't invite everyone everywhere. I just can't stand Julia to feel upset about anything. I feel like she's upset about enough. With my other children it's different- maybe I think their tougher? Maybe I think they will endure less in their lives- an assumption I'm falsely making? I don't know.
It's a rocky roller coaster ride ups and downs that make your stomach turn, make you scream to get off but round and round we go. I'm so thankful Julia isn't wracked with sobs, but I know that's just for now. Each time we go to see teams of doctors I know she knows more and more.

Sunday, January 10, 2010

Tough Stuff

We had a rough week. Julia had her regular check up with her neurologist this week. We were discussing the recent changes of her headaches and itchy skin. Julia all the sudden said "Wait- I'm gonna have NF when I grow up?" I almost threw up- I felt like I got slapped in the face and after the Dr. answered she did too, not because of his approach but because reality can feel like that. Her Dr. was so nice- he started telling her everyone gets something and NF is just a part of who she is. I on the other hand started crying and could hardly speak. I was saying "Its ok, don't worry" which makes no sense looking back. I wasn't expecting Julia to ask this. I thought she understood that NF was a part of who she was. It was like a tsunami crashed through my house over the next 24 hours. Julia sobbed inconsolably. She cried through lunch, the ride home, dinner, her bath, it was just terrible. A.J. was all upset too- he kept saying things to her like "Julia your focusing on one nutty thing- if you didn't have NF you wouldn't be you." I can't remember a time where more people in our house were as upset and crying as much as this.
A.J. is an amazing brother. He is only 10 years old and his answers to Julia were so deep, so though out. Julia kept crying and asking to be "re-born". I was holding her in my lap, crying too and trying to say the right thing, searching for the words that would make her feel better. None worked. A.J. was so kind- he told her that if she was re-born she wouldn't belong to us and we needed her. I never expected A.J. to ever step up to this type of occasion- who would? He's a terrific kid- but these situations really show just how amazing he is. Julia is so lucky to have a big brother and so lucky that it's him.
That night I slept in Julia's bunk bed. I held her while she cried and whispered that I loved every part of her. I told her over and over that each piece of her made Julia Julia. I hardly slept. I kept looking over her little face. I felt like I was in physical pain. As always I wished I could take the NF out of Julia.
Julia kept saying she wanted to be like all the other kids. She wants to be like everyone else. I understand completely what she means. I kept telling her everyone gets something and I tried to find examples, but honestly there aren't (thank God) too many kids with issues- and of course we have been so lucky with Julia's issues. We'll see. She seemed better just very tired the next 2 days. She had to adjust I guess. We have 1 more appointment in this round of checks- then hopefully we'll be "off" for awhile.
Reality can be like that- a slap in the face, a tidal wave, it's awful. Its much worse when your only 7 and 10 years old. I think it's difficult for my children to understand exactly what Julia has. Its harder when there are only questions and no real answers- even from Julia's doctors. Uncertainty is so unsettling- even when your being positive and doing positive things like fundraising.