I made a promise to founder of SCID Angels For Life, Heather Smith years ago that I would help her in whatever way I could. And then life got in the way. Normal everyday life, personal struggles, Riley’s health (or lack there of at times) What also got in the way was fear. Fear that I wouldn’t know what to bring to the table. Fear that “advocacy” wasn’t something I would be very good at. I’ve spent the past year confronting my fears…all of them…taking them head on…listening as opposed to quieting. I’ve become intimate with my each and every one, allowed them to be seen and heard…they are still present but this practice has taught me to lovingly assure myself that they are no longer running the show.
What’s left has been space…space for creativity, space for growth and space to be available to others. After starting The Mark Makers those fears turned to ideas. “What could I bring to the table?” fear asked. I answered. “I’m a photographer and a writer…images and stories are what I bring” I don’t have to become an “Advocate” to advocate…I can be me… I can pick up my camera and allow the images to stir emotion…I can sit at this screen and let my words cause action. This is my advocacy.
Barb Ballard, Heather Smith and Amy Walsh have proven to be utter powerhouse women. They have fought for not only their own children but everyone of ours for years. They laid a foundation…a foundation that is so rock solid. But they didn’t stop there…they built safe havens upon it. The email listserv connected families all over the world in a time when technology wasn’t at our finger tips. The Facebook groups enabled us to see each other and engage more easily. The SCID Angels Scholarships provide financial support at times when the “how are we going to do this?” conversation has been had at home. And then there was the war…the countless battles they fought state after state year after year with a mission to bring Newborn Screening to all. There is no white flag…they never ceased fire and victory is on the horizon. They have been there for us all both in the forefront and the shadows all along. That is their advocacy.
Heather and I are now working closely together on a new project. A new build. I am developing a program through my foundation (The Mark Makers) to document all of our stories. I have had the privilege of photographing many SCID families at UCSF over the years and am now ready to expand that reach. I want to come see you. I want to document your journey. I want to tell your story. Many of you know much about Riley through reading my blog (lifeofrileyjane.com)…your words of encouragement have come at times when I needed them most. I’ve been told by so many that they feel like they really know me though we’ve never met. I want to meet you. I want newly diagnosed families to have a space to go right away and see the healthy future that is in store for them. I want families battling backslides to see that they are not alone. I want those who have suffered past loss to see that it was not in vain and that the future is bright. I want our tales of PTSD to not be something we suppress but shout out loud so we can begin to move forward.
We are a community. A community that none of us wanted to join but I know for myself am now honored to be a part of. We all play a role in holding each other up, in validating each others struggles and ensuring a better future for those to come. I humbly ask you to consider allowing me to write your story and capture your family with my lens…this is my advocacy. I also encourage you to find yours. Maybe you know what you could contribute but like I was are held back by current life circumstances. That’s ok…we will wait. Maybe your afraid to ask…consider this your permission. Maybe your afraid you won’t be heard…we are listening.
In the coming weeks I will be releasing more details on the program and sharing specific areas in which we could use support but for now here are a few quick ideas on how to jump start your involvement:
- Anybody a graphic designer? SCID Angels For Life is interested in a new logo design.
- Open to having your story shared?…let’s talk.
- In a position to support financially? …we’ll provide details on how to become a sponsor.
- Any local families I haven’t met currently in patient at UCSF?…let’s set up a visit.
- Want to help with fundraising?…shoot me an email.
- Have an idea your dying to share?…I’m ALL ears.
- If you would like to be a team captain, a participant, or walk virtually for TEAM SCID at one of the upcoming IDF walks this fall, you can reach out to Heather at Heather@SCIDAngelsforlife.com.
Here’s a list and dates of the upcoming walks:
Atlanta: 10/27, Boston: 9/30, Chicago: 9/30, Cleveland: 9/23, Dallas: 11/10, Fort Lauderdale: 11/17, Kansas City: 10/27, Los Angeles: 11/4, New York City: 10/21, Philadelphia: 10/14, St. Louis: 10/13, Tampa: 11/17
- Friends with Oprah and able to get us on her show?…doesn’t hurt to ask right? ;-)
Thank you all so much for reading this, for your continued support of one another and for the amazing things we will accomplish together. For more info or details please reach out to me via email…firstname.lastname@example.org. Looking forward to connecting.
Mom to Riley Brown (Age 5…SCID Rag1)
SCID Won't Stop These Kids