MY LIFE'S JOURNEY by Mary-Jane Bowyer
I'd like to tell you that my life began when I married Ron, but in effect it became complete when we adopted Chantelle. I thought I had been happy, only to realize that I was merely existing. She added so much to my life, happiness and some sorrow. I thought I was a happy person, I can't remember my life without Chantelle in it. When Ron & I first went to see her, my mom came with us and said it was like taking two kids to see a new puppy and expect them not to want her. She was so very right, we wanted her from the start. Chantelle & I are cousins which gives me the right to say she is my heart string. I will always be thankful to her birth mother for giving me the honour of raising Chantelle and watching her blossom into a wonderful woman. That is my gift to her. She knows Chantelle is happy. 
But we did not ask for the neurofibromatosis that came with her. I thought I would die inside when she was first diagnosed. There were so many questions, no answers. We only asked for a beautiful little girl to raise and give her all our love. I didn't want her to have a disorder I couldn't even pronounce. I was angry and it wasn't fair. But when the pain dulled, I realized that I still had a beautiful little girl to raise and give her all our love. My little girl is a woman of 19 now and she is still so very beautiful, both inside and out. I remember when the shock of hearing that scary word was over, I needed to know the answer to these three questions:
1. Is she suffering?
2. Will she suffer?
3. Does it alter her life expectancy?
After I got a positive affirmation on those three questions I felt I could deal with anything that life threw my way. I feel God knew that I would have a greater mission in life that just being Chantelle's mom with her set of problems. He knew I needed a greater focus and direction to help others just like her.
I'm learning something new every day. A whole new world has opened up to me. I try not to take things for granted and appreciate all the blessings I have been given. To fight for those that can not fight for themselves and mostly to help make the world a better place. I hope I am fulfilling my life's mission. I want to leave my mark on this world, as being someone who cared and added the personal touch to something as unattractive as NF. The public doesn't see the beauty that NF affected people have inside them. NF people may not look good on the outside but what is inside of them is beautiful. I know I am a more understanding person because of those I have met. I hope one day that neurofibromatosis will be wiped out and there will be no more needless pain and suffering for those affected by this disorder. That would be there reward. They deserve that honour. In our lifetime they will find a cure. What a difference it will make to our future generations.
I have the honour of being affiliated with the Neurofibromatosis Society of Ontario, eager to create public awareness, fund research, support those affected with NF and their families. My hearts wish is to make Neurofibromatosis a household word and name. A name where their is no ignorance, stigma and pain associated with it. Still, today it is like the elephant (no link intended to the Elephant Man's Disease) in the room. Everyone sees it, yet it is ignored; hoping it will go away or that it was never there. Only the people with NF and their loved ones see it.
But there is help out there. We are learning more and more every day. I see a big change in the public from when I was first introduced to the NF world some 15 years ago. The progress is slow the rewards are small but we will see an end to this disorder, a cure to stop the pain before it starts. For those that must endure the MRI scans, Cat scans, evoke potentials, assessments and treatments for a disorder they didn't deserve, I pray one day we can say 'We have found a cure for NF'. "Neurofibromatosis is now history."
If I can offer support to anyone or help direct you to the proper medical care, please contact me. We are all there to help each other. That is a gift we can give each other. Thank you for reading my story and God Bless You & Yours!
