Two summers ago, we were living in the Ronald McDonald House and Sam had a morning bone marrow biopsy scheduled. These required that Sam be "NPO," which is hospital-speak for "starve your kid." His NPO started at 5:30am, I believe. Anyway, the point of this is that Sam was so worried about not eating that he wanted me to wake him up at 4:15am (his choice of time) so that he could "eat a little something" and then go back to sleep.
I think he was testing me.
But I took the challenge, and I set an alarm for 4:15am. And I remember doing a lot of exaggerated moaning and groaning about how much I must love him to get up so early...and then I tagged the alarm with "I love Sam."
And then when the alarm went off at the ridiculous hour of 4:15am, he groggily asked if I could try again at 5am.
So I, ever the loving mother, set another alarm for 5:00am. This one I tagged with "I love Sam even more." If you're keeping score at home, he didn't want to get up then either.
I'm one of those people who keeps all the alarms in her phone. I figure they might come in handy another time, so as not to have to make new ones. So those alarms, for 4:15am and 5:00am, are still there.
Yesterday, I got up at 4:15am.
"I love Sam."
I thought it was entirely fitting, since I got up at 4:15am to catch an early flight to Washington, D.C., where I visited four Congressional offices. In each one of them, I explained that I was there because my 6-year-old son Sam was diagnosed with leukemia and he died only 18 months later. I reminded them that the statistics about survival rates for childhood cancer are more than just smiling bald kids and that Sam wasn't lucky. And I reminded them that even the "lucky ones" are impacted by years of medical fragility and have challenges with access to the care they need. I reminded them of the upcoming appropriations for the National Institutes of Health and the National Cancer Institute and I begged them to give as much money as possible for cancer research. And I asked each of them to sign on as sponsors of the STAR Act, (you can read more about it here) which, amongst other things, asks for a pediatric oncologist to sit on the National Cancer Advisory Board.
Washington was bright and hot and didn't feel like Sam at all.
No feathers or turtles popped up along my way.
But all throughout the day, I felt a warm ball of pride that I could say Sammy's name over and over again in the halls of our government offices. He didn't even have a chance to vote, let alone run for office (He probably would have made a phenomenal politician. He had mad negotiating skillz.) but he was there with me, pressing me forward and lifting my steps.
If Sammy taught us nothing else, he certainly taught us that one person CAN make a difference.
Do you want to do more? Read here for how you can #StepUp to help make childhood cancer a national priority.
Three years ago....Checklists and PomPoms
Two years ago....Leaky Bubble
One year ago....Instead