The Beginning...

This blog is for the purpose of reflection and expression. In my journey of dealing with the day-to-day struggles of NF, I keep so many emotions and thoughts inside. I don’t want to burden others with my struggles. I even shield those closest to me from these feelings. I want to be strong for them, I desire to be the “fighter” that I have always been because of this condition. In some circles, they call us with NF “heroes” and that is a moniker I am not sure I can embrace easily because I do not feel very heroic. I’ll save that for another post, this post is about the beginning. How my journey with NF began.

I am the middle child and only boy of 5 children. I am the only one in my family with NF. I am what they call, a spontaneous mutation. I was young at the time of diagnosis, 6 years old I believe. I recall numerous appointments with my pediatrician due to the café au laits on my torso and other areas. He suspected NF and sent my parents and me to the Children’s Hospital in Birmingham, AL to a specialist. I remember, vaguely, my first CT scan and the fear I had upon first seeing that big machine. I also recall the fear my mother had in her eyes as this was all so new and there wasn’t much information on NF at the time. The uncertainty, even for a 6-year-old was a lot to bear.

I had a normal childhood outside of the yearly checkups in Birmingham. As I grew, NF progressed as more café au laits appeared then followed by the development of neurofibromas throughout my body. This is when my new normal began. I found it more difficult to be a normal teen because when my buddies and I would “rough house” they would hit my neurofibromas causing me a great deal of pain. I tried to be athletically active, but the pain was too much to play basketball as contact became a problem. As a teenager, the last thing you need is something else that makes you stand out as different.

Looking back, I can see where NF disrupted so much during my teen years that I didn’t realize at the time. I struggled in all aspects of school but didn’t understand the connection until much later as more research on NF and the symptoms was released. I do not know if having this knowledge would have changed much for my experience with NF as a kid/teenager, but I am now better equipped to help my daughter (10 years old) deal with the challenges of NF as symptoms arise.

I don’t know what I want to get out of blogging my thoughts other than just finding an escape. I hope that as you read you will be able to understand my struggle. Again, this is not a pity party or attempt for sympathy. It is simply me letting you know that even though I smile, I may not be okay. I don’t believe in being fake, and I never will be fake. However, I do smile and do my daily routine and try to make the most of it because it is my life and my journey. I strive to set an example for my kids so they will know that setbacks are not the end of the world and that we can overcome.