Today is World NF Awareness day. Neurofibromatosis (NF) is a neurological disorder caused by a mutation in the NF1 gene. This is caused by either a parent with NF passing on the mutation (a 50% chance) or a new random mutation. NF happens to 1 in 3000 births, making it a "rare" condition. But it is more common than cystic fibrosis, muscular distrophy, and Huntington's Disease combined. For more information, visit ctf.org.
For NF Awareness day, I want to express my gratitude for something I never thought I would be thankful for. I am thankful for whatever caused my son's random genetic mutation in his NF1 gene. I know I haven't always been grateful, in fact, I'm usually quite the opposite. Usually I'm saying why him? It's not fair. And it still isn't fair, but neither are many things that happen in this world. Fair is an illusion we all wish was real.
But I am grateful for this experience, as unfair as it is. Before having children, I never gave much thought to what it would be like to raise a child with special needs of any kind. Those types of things always happen to other people right? Wrong. These types of things happen to anyone, indiscriminate of pretty much all factors.
Having a child with this diagnosis is never easy. Sometimes it's downright frightening. But my eyes have been opened to so many things they never would have been otherwise. The level of compassion and understanding I now have for anyone with a chronic illness or disability, or child with either, is not something I would have achieved without this experience. There are some things, many things actually, in life you just can't understand until you experience them yourself.
So I am grateful for the compassion, patience, and empathy I have learned through this experience. I'm grateful for the opportunity to help raise awareness for NF. I'm grateful to be a part of the NF community, a group of people who truly care for one another. And most of all, I'm grateful for the amazing support we have received from our family and friends along this journey. Sometimes the world can be cruel and ugly, but when you receive real support from people you love, it's much easier to see past all of that and into the staggering beauty in the world.
So my thanks goes out into the universe, bringing me one step further on my journey of acceptance of my beautiful son's condition. Because of it, our family will be able to make a difference in the world in a way I never imagined.
If you would like to join us in spreading awareness, the NF Walk will be happening in Portland on July 24th. You can join Team Sebastian here: http://nfwalk.org/portland
If you'd like to make a donation instead, you can do that here: https://join.ctf.org/fundraise/team?ftid=75933