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.