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.


  1. I always find comfort reading your thoughts as Aiden has been itchy like this most of his life, he however, has not had the migraine pain and hope he does not. I am sorry to hear Julia does. We have our first MRI this month, and I am nervous. Aiden is only 4 but his behavior in school has been very different, he is not interested and has gotten in more"trouble" than before I hope it is not a sign of a tumor, and I too am grateful we don't need chemo yet.
    Enjoy the holidays and their smiling faces Christmas morning.

  2. Migraines - As you know I also have NF1 myself. I have had migraines since I was a little girl as well. They used to be so bad sometimes I would be sick at my stomach. I am 33 now and they, we well as the itchiness, have not become worse. I do tend to get more migraines in times of high stress, but other than that, things have always been pretty stable for me. I hope that is the case for Julia as well.

    Inattentiveness/trouble in school - Savannah, my only child that has NF1, also has these problems. However, they have been lessened considerably with ADHD medication. We are now also starting therapy for the ADHD. Children who have NF1 have a much higher incidence of this disorder as well. It might be worth checking with your ped/neuro docs on. (Savannah is 5 and in K)