It’s been a long time since I’ve written here.
While it’s hard for me to remember exactly what’s gone on in the past four months, I’ll sum up the major points as they come to mind:
- I’ve had more conversations and emails with Juliette Williams from the NMDP, received a background check and completed the online training courses for both Level 1 and Level 2 Volunteers. I am now a Level 2 Volunteer/Ambassador for the National Marrow Donor Program, which means I can coordinate and run drives on my own.
- So while I can coordinate and run drives on my own, I’ve still yet to see one in person. The training was thorough, but I have a feeling it won’t really compare to the real deal. I need to make it out to a real drive sooner rather than later. I have a lot of questions as to how to scale a drive and optimize it to accomodate a large number of people.
- The training (an online tutorial) was honestly kind of intimidating. I didn’t know there were so many steps and volunteers needed to coordinate a drive. I was genuinely surprised as to how involved a process it is, from marketing/awareness, processing kits, confidentiality concerns and fundraising.
- When I take the time to reflect, I feel enormously guilty for not doing more with my time with regards to this initiative. I can generate legitimate-sounding excuses to appease others (work was busy, life was busy, etc.) but they don’t appease myself. If I really wanted it, I’d work harder at it. That’s the bottom line. And I do really want it. I’m not sure what gives.
I don’t know what it is that I’ve been waiting for. I have the time and the resources to move forward. What am I looking for? The seas to part, a burning bush, a vision in a dream? Grandiose has never really been my style. A generic church newsletter, perhaps?
Two weeks ago I was skimming my home church’s e-newsletter and saw the words “Bone Marrow Drive” appear as a header. Here’s the text included in that newsletter:
Dear Brothers and Sisters in Christ,
Our 18 month old son, Timothy Song, is suffering from a primary immune deficiency disorder called CGD (Chronic Granulomatous Disease). Since his diagnosis at the age of 2 months, he has been on antibiotics and immune boosting shots to keep him stable. Certain common infections are life-threatening for him. We have been very careful in what we expose him. So far, God has been gracious and Timothy has been growing well. The only cure for this disease is a bone marrow transplant. With a successful transplant, Timothy can live a healthy, ‘normal’ life with a normal life expectancy.
We are grateful for your support and for your consideration to hold a bone marrow drive. We were told since Timothy is Korean; he would most likely find a match amongst the Asian population. It would be tremendous to have more people join the registry. Timothy’s particular HLA typing (this is what they match for the marrow) is uncommon and we were informed that he would have a difficult time finding a perfect match. But we know all things are in God’s hands and He knows what’s best for Timothy.
For more information, we have created a blog site to raise awareness and to update on Timothy’s condition (alicesong.com).
Thank you for your consideration.
Alice and Daniel Song
Reading Alice’s blog is humbling. I see a woman doing anything she can to save her child: running drives, reaching out to public figures, playing commercials and PSAs on network television, and blogging publically and candidly about very personal topics. Cancer isn’t a fairy tale, and there are no assurances of a happy ending. Yet she’s willing to put herself and her child out there for the sake of a cure. A mother’s love on display.
I discovered that one of Alice’s friends goes to my home church and has decided to run a drive in Timothy’s honor. It’s scheduled for September 18th, so under two weeks from today. After getting her contact information and emailing/talking with her a bit the drive has become something of a joint venture. Although she’s working with a different organization (A3M), I’m hoping my training comes in handy.
The plan is for me to speak at church on one of the Sundays, which is always an experience I counterintuitively both dread and look forward to. I look forward to it because I know I have something to say; I’ve spent the last 5 years of my life crafting the content of this message. It’s a combination of the physical, emotional, mental, and spiritual lessons I’ve experienced over and over again. I dread it because public speaking like this is always a bit nervewracking. But it’s not all a loss, as nerves keep you on your toes. Nerves keep you honest. Nerves force you to prepare thoroughly.
There’s a lot to be done between now and then, and a lot of unknowns. Neither of us have experience in running a drive. But this could be the spark I’ve been looking for. For that I’m excited, and thankful.