First and foremost, DC blew my mind. I'm not a well traveled being. This was my first trip to DC and my first real glimpse into the colonial beginnings of our country. The entire five days that I was there, I kept thinking.... "Am I really here? Is this really happening?" The days flew by in a frenzy. So much going on, so many people to meet. I only had time to meet/talk to a fraction of the people that I wanted to.
I have been spending quite a bit of time on the 'why' of shaving my head. Yes, having the opportunity to meet these amazing women, their families, their friends and the people who support childhood cancer families was a thing I could not pass up. Seeing these faces in the flesh, instead of words/images on a computer screen was amazing. These are people who understand what we have been /are going through without me having to say a word. These people that kept me connected during months of isolation. We came together to do something even more important, though.
I went to DC to work. I only realized this as the events began to unfold. I came home with an ownership of what we did and why. I came home with the realization that, YES, I can make a difference.
The work that we accomplished is multi-layered. The obvious and sometimes overlooked main point, was to raise money for the St Baldrick's Foundation. In order for them to fund childhood cancer research. This is my number one charity for supporting childhood cancer research. I've spent many an hour thinking about this decision. Gregory's cancer is very uncommon. 25-50 cases diagnosed in the US every year. We are fortunate to have a foundation to support Juvenile Myelomonocytic Leukemia. The JMML Foundation. They do fund research specific to JMML and I have gone round and round in my heart, thinking about how to support them. They also support JMML families. At this point there are two roads of 'treatment' for JMML. One is stem cell transplant. The other is if the kiddo also has Noonan's Syndrome and the JMML stabilizes. Strange, I know. Right now, I feel that my support of childhood cancer research through St Baldrick's is going to yield a higher benefit ratio for the childhood cancer community. Which does not mean I've left our foundation out of the picture. I just have yet to figure out how I will support our community in a meaningful way. I must admit that my fundraising efforts for my personal goal fell very short. I have never done anything like this before and this experience taught me a lot about fundraising in general. I do know that although my dollar amount is low, this is not the only time I will participate. I also know that our combined efforts have created life-long supporters of St Baldrick's. Which is just as important as my individual efforts.
Memorable moment:
Early Wednesday morning a few of us headed over to Union Station to check out the site, hang hope flags
and talk to the production company. The event was in the Main Hall of Union Station and we had a beautiful 7'x8' banner hung between two pillars, right where the stage was set up.
As we were milling about a woman approached us, practically in tears. She then told us this....she was on her way to work, had a late night and was heading to get a coffee in the station. Something she does not customarily do. She noticed our banner, saw the awareness ribbon out of the corner of her eye. Thinking it was a pink ribbon she initially didn't give it a second thought. Then it struck her. The ribbon was GOLD. Gold for childhood cancer awareness. She came over to check out what was going on. Then her story was revealed. Her son just past one year post-bone marrow transplant for relapsed ALL. Her emotions over finding the gold ribbon in Union Station was overwhelming. For all of us. We walk through our days, feeling all consumed by this thing, CANCER, that has appeared on our doorsteps. Yet terribly isolated. This small encounter let this mom know that she is not alone. She matters, her child matters, their family matters. Childhood cancer matters.
The shave itself was emotional. Chaotic. Three hours flew by in an instant. Not too long before the event, I had reached out to a fellow JMML family. They live in Arlington, VA which is not far from DC. I was hoping that we could meet while I was in DC. The Barnes family came up to DC for the event. Not for the event, but a chance for us to meet. Kelli is heavily involved with the JMML Foundation and it was so great to sit down with her and her husband. They also had their two little guys with them. They are a family who do not have a JMML survivor. Kamran was not with us, but was very much with us, as we talked about this disease and this experience. They are a great family and I feel so very lucky to have been able to sit down with them.
Dr Peter Adamson was one of our key note speakers. He is the chair of Children's Oncology Group. He also spoke at the PAC2 workshop on Thursday and the Childhood Cancer Caucus Summit on Friday. I know I keep using the word amazing, but it just fits. He is devoted and inspirational.
This video was put together by Social Studies DC. They were able to grab the highlights of the night and the nuggets. Can't tell you how awesome this is.
Shave for the Brave from SocialStudiesDC on Vimeo.
"I personally look forward to the day when, overcoming the number one disease killer of children, will be a national health priority everyday of the year - not only in September." ~ Kathleen Ruddy, Executive Director, St Baldrick's Foundation
Our professional barbers for the night were from PR at Partners. They were phenomenal. In fact, one of the stylists was so moved that she sat down in that chair and shaved her head, too. From many of them we heard that this event was one of the most powerful things they had ever been a part of.
We even had a post-shave glam station! We received mini make-overs to help us feel pretty in our first hours of being bald. Votre' Vu was our make-up sponsor and it was FUN! I know for myself, I felt flippin' stunning the whole night. THANK YOU! (It was amusing to discover that these high-end make-up artists use the same brand of mascara as I do. The classic pink & green tube of Great Lash!)
Since that brief experience in the barber's chair, I have never felt so beautiful. Listen To Your Mother helped me to reclaim my strut. 46 Mommas helped me to reclaim my beauty. It's the first time, ever, I have felt truly comfortable and willing to be in front of a camera. Strange, but I'll take it.
I'll have to share more later. For now here are some pictures from the event. Courtesy of:
Tim Coburn Photography
Julie Stewart Photography
Shay Holman, Elite Image Photography
Cipriana Thompson, Soulfully Speaking
Margaret Walker
Michael Crane
Manibu Yoshinaga
Dari McManus
Greg Blakey Photography
More photos can all be found on our 46 Mommas website under Multimedia, listed by photographer.
The fundraising year is not over.....we have through the end of 2011 to reach our goal. As of today, our event has raised $320, 225. We are number 5 for St Baldrick's top events. It would be awesomesauce if we could bump even higher! No donation is too big or too small. If you are a family that gives to charities for the holidays, please consider this one. I'll be asking again as we get closer, just wanted to start planting seeds.
My personal goal is $5,000. I've currently raised $2,445. Which is not even half way. Here's my participant page.....Momma MindiTheMagnificent. Thank YOU!
As always.....love, love, love. Fierce Momma Love!
MindiTheMagnificent
~Momcologist
1 comment:
perfect.
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