It seems like my heart is arguing with my mind on a daily basis lately. Julia has to have a sedated MRI in 2 weeks. She wasn't scheduled for another until July but she's had a sudden increase in migraines. We know their migraines because she complains she has a headache, lies down, throws up then sleeps with an ice pack on her head. My poor baby :( I HATE this. Julia's neurologist wants a really good look at her brain stem to be sure the lesion there hasn't changed so sedation here we come.
Most days I do ok- I push all this stress away and focus, focus, focus on my very full, very busy life. Lately with these migraines and this looming MRI my mind is distracted. Thoughts about Julia, NF, headaches everything just swirl around my mind like a hurricane. It's hard to think of much else. I am doing better at crying though, I used to cry through days and nights and sometimes I would be crying and not even know it! I would all the sudden feel a tear drip down my cheek and think Oh I'm crying! It was crazy. I haven't cried that much over this just worrying and feeling tense.
My mind has to constantly convince my heart that Julia will be fine. It's a constant battle. My mind keeps telling my heart not to worry, to calm down that my baby girl will be ok. But my heart, my heart hurts and cries and jumps up my throat with worry.
My mind also knows that 7 year old shouldn't come home crying because their head hurts, a 7 year old shouldn't ask to leave the dance or the movie night because her head hurts. Children should just be free- free to play, dance, sing and have no pain.
Monday, February 1, 2010
We attended the Rolex 24 in Daytona Beach for the weekend. The whole experience was amazing!! Julia's name was on car #14 along with bunches of other NF hero's. It was a wonderful family experience. All the NF families we have been meeting at events all over the country were there. Our kids just "click" right together now. It's really important to the our children that they know other families dealing with the same issues as us. We think it's been really helpful to our kids- they don't feel as though we are the only ones dealing with NF issues.
One of the funniest things that happened there is that AJ though he had met another NF sibling before. He said " Mom we went through all the fundraisers but no- we never met!" I thought it was so funny that AJ understood which activities we did were NF related and which weren't.
It was fun for all of us as parents to catch up while our kids played. We got to catch up about our kids behavior, medical issues and exchange information on whats helped our children deal with all these issues. Its truly priceless- so many of us go through similar things- it was so nice to feel like part of a group, feel connected to other moms in ways I don't connect with moms that don't have NF children. The endless waves of stress and anxiety and clouds of worry I battle are shared by these moms- thank God for them. Isolation is a terrible feeling.
It was worth the travel time, the exhaustion of traveling with 4 kids, the getting in late and working the next day. It was just amazing to be a part of something so much bigger than yourself :)