May is NF awareness month. Neurofibromatosis. It affects one in every 3,000 people. My son is one of those affected; it's time to help spread some awareness.

I first heard the word Neurofibromatosis about six years ago this month. I was taking my sweet newborn, Jett, for his well-baby check up and couldn't wait for his pediatrician to tell me how much he weighed, how long he was and other fun newborn news. What I wasn't expecting was my doctor to look at me and tell me he had something serious he needed to talk to me about and I needed to listen to him closely. Jett's adorable coffee-colored birthmarks, because he had more than six on him, were a sign that he could have a possible genetic condition and he needed to send us to a specialist in Portland. He then warned me to stay off the Internet and not do my own searching about this condition that I had never heard of because it could unnecessarily upset me.

"They only show the worst case scenarios on there" he said, and there was no need to work myself up.

I didn't listen and ended up calling him hours later, crying and trying to find some reassurance. He said there was a good chance Jett didn't have NF, which is a genetic condition that causes tumors to form on nerve tissue and tumors can develop anywhere in your nervous system. Tumors can form in the brain. It can cause blindness. Sometimes tumors can become cancerous.

We don't have a family history of NF, and he didn't have any of the other indicators of the condition. I was hopeful that he just had a few too many birthmarks and that was all.

Visits with pediatric genetic specialists and ultimately DNA testing finally revealed the truth. The answer came in a phone call. The test results were in. I was 90 percent sure they were going to tell me he did not have it. When they said Jett had NF I felt like I had been kicked in the stomach. How could my sweet little baby have a condition for which there is no cure? Why him?

As a parent you want to protect your child from every possible thing that could hurt him. But there is no making this go away. No knowing the future. No test to judge how severe his NF will be. All his father and I knew was Jett's NF was caused by a genetic mutation. Receiving his diagnosis only made us want to hold him closer. Hug him tighter. Protect him. And educate ourselves.

The past six years have involved multiple trips to different doctors, echocardiograms to rule out related conditions, annual ophthalmologist visits to check his eyes to make sure nodules haven't formed that could cause him to lose his eyesight. And, of course, annual visits to the pediatric genetics office in Portland to evaluate any indicators. Freckling in certain areas can occur; it has. Nodules can form on the body that may or may not become tumors. When he was a toddler he developed a cluster on his ribcage and another on his back. A few weeks ago I discovered a new nodule on his back. My heart sank. I cried. It's hard to see it progress. I hide my tears from Jett, and as long as the nodules move under his skin and don't feel fixed to anything he won't require an MRI yet, which would check whether his organs were being affected.

Currently, our little kindergartner is excelling in school and loves it so the possibilities of learning disabilities that can be associated with NF aren't as big a concern for us, but it's always in the back of our minds.

For now, Jett's symptoms have remained fairly mild as far as the condition goes. I pray they stay that way throughout his life. His pain is my pain. And knowing I can't fix this or make it go away is a hard thing for me to accept. Research and education about NF continues and I hope that someday there will be a cure, especially since Jett has a 50 percent chance of passing it on to his own children.

I rarely talk about Jett's condition. At first, I admit, I was too emotional to discuss it without crying, especially in the beginning when we knew so little and there were so many uncertainties. As time has gone on, I think about it less and less. I try and focus on what I can control - raising a happy child who knows his mom and dad will do whatever it takes to help him lead a normal, healthy life.

Some members of our family and friends probably aren't aware of his diagnosis; this is because it doesn't define him or how we see our son. To us, Jett isn't our son with NF. He is our sweet, sensitive, funny, car-loving little boy. He is a protective big brother. He makes us smile every day. I couldn't be more proud to be his mom. I hope by sharing our story, it may help another parent facing the same diagnosis. It's an uncertain road ahead in many ways, but one thing I am certain of is that no matter what, Jett will always be OK because we have each other.

Kelly Woods lives in South Thomaston with her husband Mike and their sons, Jett and Colt.