Running.....

I never was a runner. I never had a great desire to run anywhere, much less a marathon. In fact my favorite activity is drinking diet coke and eating chips by my pool! The upside of training for the NYC marathon is I'm really toning up. I'm getting to look like I'm in good shape.

As you train you build speed, endurance and strength, until race day where you give it your all and get through it. You should be in your best shape by the race. As you live with NF you lose your speed, your health but never your endurance. NF people and their families seem to have an unlimited quantity of endurance. We seem to be able to ride wave after wave of what NF brings. What an NF person's body lacks their mind and their spirits make up for. What NF can never take is your will to overcome, your enduring spirit. I know I can endure this race, I can run these 26 miles for my tiny ladybug girl because I have watched her endure so much more.

The much more important part is someday my four children will know I have done everything in my power to help Julia. They will know how hard I fought for a cure and treatments. Because someday they are also going to know the awful truth of what NF is. They will understand NF as adults, not as children. I'm really not looking forward to that day.

Now they know that Julia needs extra appointments, extra checks to keep her healthy. They know Julia's body works differently than other children. It's been very difficult to explain NF in terms that are truthful yet not stressful and scary. It's a fine line we walk. They know that we worry and that NF sometimes makes us sad, that is impossible to hide from them. They have no idea that the cells in her body are programmed to make tumors grow.

I wish everyday that as Julia grows we would watch her get better and better. Instead we are going to watch our baby get progressively worse. At what rate or time no one can predict. I keep wishing that this would go away and we would see progress, we would watch our baby girl bloom into a healthy woman. It's not that kind of thing, it will be a lifelong battle. Our little girl will grow to be a beautiful woman, she will be the strong firecracker she's been since she was born, but healthy? Healthy is a word I hate, one that makes my stomach turn. Health in my house is for the day, one we can never count on for tomorrow.