The Lost Speech, aka The Document that Wouldn’t Print
I am determined to keep putting SOMETHING on this page at least 2x a week…so here is the rough draft of how I meant to introduce the fundraiser our family runs for the Children’s Tumor Foundation. While this blog is in many ways an attempt to reclaim a part of my life that existed before 2004, events since then just have a way of sneaking in everywhere.
Scientifically, it means neurofibromatosis, a genetic disorder that occurs in 1 in 3,000 births. A disorder that sounds scary. A disorder that IS scary…and hard to spell. A disorder that can cause tumors to grow anywhere in the nervous system. Scientifically, NF is a puzzle, a genetic enigma that varies from case to case, a gene gone awry on chromosome 17. To researchers and doctors NF is a tantalizing and troublesome problem that intrigues and confounds.
For the Children’s Tumor Foundation, NF is a mission. More accurately, solving the NF puzzle and imagining the possibilities of that solution drive the work of the foundation. The Children’s Tumor Foundation provides a positive answer to NF. Our favorite part of CTF is NF Endurance…Dave will talk about that later… The NF Endurance arm of CTF gives a tangible way for extreme athletes or runners, or active people or…well, anyone who has sneakers or …a pulse…or with a flair for wearing neon yellow… to push themselves beyond their physical limits to raise funds for CTF’s mission.
Personally, NF isn’t a puzzle, or a possibility. It’s my family. My spouse. My daughters. NF is deeply personal for me, and obviously our whole family. I take NF personally, I despise the assault it has waged on my children. When I dreamed of being a mom, I had never heard of NF. I never dreamed of spending any time with my children in a pediatric oncology unit. Never . I resent how NF has glomped my expectations. Some days for me NF means NOT FAIR, or Numbing Fear, or any number of weird acronmymic translations. NF has an unwelcome say in my future, my family’s future, my children’s future.
Now you know why I’M scary…
But NF doesn’t define us…we may bend sometimes before the ravages of this disorder, but we will not break.
We depend on nights like this where we stand together in hope and defiance—even if that defiance is shaped like a spritz cookie. I think HOPE is just that: an act of defiance in the face of yikes too ginormous to face. Nights like this transform NF for us. Tonight, NF means new friends…we are so honored to have some of our NF heroes from other states here tonight. NF means NOT FINISHED…until we have treatments that work, we won’t stop eating cookies…and You KNOW I mean that…NF means Never Fear…never fear the unpredictability, the unknown, the negative possibilities that are only a doctor’s visit away for NF families.
So tonight, we are grateful for this unexpected consequence of NF, the good that comes out of something so bad. We are grateful for all of you. Thank you for joining us in facing this disorder and fighting for a cure.
to learn more about NF, check out www.ctf.org
for our NF story, visit www.caringbridge.org/nj/gennahenna
for lots of great cookie recipes, visit your local library.