This vacation from NF I though I would be having isn't really happening at all. Julia has frequent headaches, stomach aches and sleep issues. I have to watch the frequency of all of these things. I think with an adult you are more aware of what's normal for your body, so a different more painful headache or stomach ache would be a signal that something's going wrong. For a child it's basically a watch and wait situation. We're very careful not to give too much attention to Julia's complaints because she complains all the time. I track the times she has such bad headaches that she falls asleep, asks for Tylenol or puts a cold cloth on her head and lays down. The stomach I watch and see if she stops eating, has to go in the bathroom a lot, and sometimes she'll lay with a bucket. NF is associated with pain, especially headaches and stomach aches. What we're watching for is a change in frequency or severity. New pain can mean a tumor growing on a nerve and it could cause the pain. That's a little tough with a very dramatic almost 7 year old. I always say "Your fine, what are you playing now? School? How nice. Whose the teacher?" I try to deflect her attention. If she stops playing, lays down and wants company I'll ask where it hurts, get her a drink of water and tell her she should take a nap. If she's ok enough she'll get up, she hates napping. If she's really feeling sick she goes to sleep. Julia is entering day 3 of a bad stomach ache. She says it hurts in the middle of her stomach and she keeps pointing and saying "Right here mom, right here!" She's also eating less. I'm going to give it until Saturday morning. If it still hurts I'll go to our pediatrician first- hopefully it's a virus.
The sleep issue is another problem because not enough sleep or a bad nights sleep can cause headaches, stomach aches and behavior problems- all of which Julia has. Julia will wake up a very grouchy ladybug after 10 to 12 hours of sleep. Julia falls asleep on car rides that are more than 2 minutes. She wakes up and jumps into my bed at 2 or 3 p.m. 2 or 3 times a week, complaining of bad dreams. Her dreams are awful and I pray daily their not some sort of premonition she's having about herself. Her nightmares are the same over and over. We've kicked around doing a sleep study. If we could solve her sleep issues it could solve her other issues.
Every time I hug Julia or she curls up on my lap I feel a tidal wave inside me, my stomach just twists and turns. I want to take the NF out of her, take away the pain she feels, I want to remove any chance of danger from her little tiny life. I want to hold her all day and protect her. When I look at her, listen to hear, hear the way her whole body laughs tears fill my eyes. This grief will never ever go away. I miss her and she's sitting right in front of me- but what I miss is the way our life was before NF. The carefree way it used to be. I miss thinking that a stomach ache was just a virus, that a headache was just a cold. No more small worries in my world.
I hear other parents chatting in stores, at birthday parties or at parks and I'm so jealous of their complaints. I hate that jealous feeling. I listen and cringe and bite my tongue. I smile and nod and I wish my world was all about the ear tubes, the virus, the bed wetting. To us that seems so simple. I usually walk away my eyes of course filled with tears but there aren't too many days their not tearing up. Then I think there are so many parents, many parents that I now call friends, and they would give anything to hold their children. They would want my life because I am very, very lucky to have all four of my children to hold. I never for a minute of any day take that for granted. From their perspective this stress I have is by far better than the longing they feel. I think of those parents everyday. My heart truly goes out to them for the loss they feel is what I fear the most, it's what fuels all my actions and decisions. It changes how I think, feel and live, it makes our good days sweeter.I think of them and remember it's all about perspective.
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Perspective is something i write about often. The fact that you are able to give your life perspective puts you ahead of the game. I know you've read my complaints, and realize that in your world my sleep depravation is cake. And, from your perspective I couldn't agree more. Your post is very much a wake-up-call for many; including myself. The pain you feel and the fears you live with are something I cannot relate to, but ,as a mother, can imagine being absolute torture. Sharing your experience and opening your heart to the world is great therapy and a priceless source of inspiration to all. Your ladybug is in my thoughts and prayers, as are you, Anthony and your 3 other children. Hope her belly stops hurting NOW!
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