Oh how far we've come...

A year ago our life was so different. We just had our fourth baby, Alexander. We had just taken Julia for an MRI and not too many people knew Julia had NF, she didn't even know. It was just too painful to talk about and still is, but we had a bad scare and that changed everything. Julia had an MRI of her brain and spinal cord. She was having some issues that any kid could have but if you have NF could indicate problems.

I had all 4 kids ready to go. The 3 big kids were at the back door and I was strapping the baby in his car seat in the hall, we were going to meet Anthony for dinner. Anyway the phone rang- I saw 212 and that's the Dr.'s area code so I picked it up. Julia's Doctor explained they saw a "spot" near her bladder area. It could be nothing, could be something, but with Julia's history of bladder issues we had to follow up and get a scan of her entire abdomen. This meant another MRI under anesthesia. It meant we could be entering a God awful time with Julia. NF tumors are hard to get rid of. If they can be surgically removed but they usually grow back. If they can't and the tumor is growing or effecting your life, they try chemo or radiation. I hung up the phone. I felt volcanic. I picked up a winnie the pooh bus that was sitting in front of me and I threw it. I threw it so hard it smashed into the wall behind me and left a large hole. I know I shouldn't have done that. AJ is the only one that moved everyone else froze. He came over to me because I was crying and my 9 year old hugged me and said "Mom, are you ok?" Then Julia and Jacqueline walked over and Julia, in her ladybug style asked if we could go eat right now.

I just started laughing and crying and we met Anthony for dinner. I wanted to cancel our life right then. I told Anthony about the call while we ate. Alex's christening was the next weekend, the day before the next MRI, but Anthony took over. I just went through the motions during the next 2 weeks. I cooked, changed diapers, cleaned up, hardly slept and I cried. I cried through days and nights and sometimes tears would roll down my cheeks on automatic and I wouldn't even realize I was crying until one of the kids would ask if I was ok. I was in a daze and I was finally admitting something was very wrong with my daughter. My head was heavy, my heart was broken.

Anthony took over. He wouldn't let me cancel our life, he organized the Christening, and kept us moving through days and nights. I have such a wonderful husband because when he noticed the hole in the wall which was the next week (I didn't bother to tell on myself). He asked " Who did this" I said "Me, the dr. had just called." I didn't apologize and I never will. He just looked and said "OK" got spackle and fixed it. We got lucky. The spot was discovered to be a shadow after a complete abdominal study. This event launched us into action. We came too close that time and I felt guilty everyday thinking how could I do nothing to help my daughter? I thought a lot during those days about Julia's future. I decided it would be much easier for her later if everyone was educated about NF now. If they learned about it now, she would have less to explain later. I didn't want NF to be a secret we were keeping. I wanted it to be the way our family lived, I wanted to teach my children how to manage this in a positive way. I spoke to a lot of people that have NF and asked them what made a difference for them as they were growing up. I called The Children's Tumor Foundation and signed up for The Staten Island Walk and they asked Julia to be an NF Hero. I still carry that helpless feeling, but the fundraising, the running, everything we do helps fight that. It gives us the only control we can have. A.J. turned to me the other day and said "I love planning this carnival, making the decisions. It makes me feel better." I agree A.J. -it's the only choice I see.

This is the reason I'm training for this marathon, the reason I'll run, walk, I'll do anything. I have to know I did everything I could to help my ladybug girl. I'm a really lucky girl because everything I want to do my family calls and asks to help, my husband never says I can't- he always says "Tell me where to go and what to do and I'm there!". Really there's nothing better in all of this world than working on something that's much bigger than just you, knowing that we're helping so many people and children- I'm proud of us this year!