This week I discovered something else that Sam’s death took from me.
It took from me something that is actually very important to me — the ability to feel helpful.
Before Sam relapsed and died, I was a resource. I could share my knowledge and experience about being a cancer parent, about cancer treatment, about hospitals and doctors, about siblings and pharmacies and inpatient snacks.
I was useful to other parents and families.
And while I actually figured this out a while back, it hit me hard this week.
Our experience, my very existence in fact, embodies their worst nightmare. No one wants to learn from my experience because no one wants this experience. Ever.
And I would never, ever, ever wish it upon anyone.
Sam practices taking pills at the hospital. “He was very proud of the skill, and we talked about how he would be able to teach other kids,” Phyllis wrote.
Maybe it’s just a selfish thing, this way that I’m feeling. There are other very useful, wonderful, and oh-so-lucky resource people out there.
But it’s one more thing that I’m missing. It’s one more way that my life has changed, even in the brief period that I was useful and helpful — and now I’m not. I wanted our family to be that beacon of hope. I wanted us to be that shining light that helped others to see what was possible. I had imagined it. It was part of what kept us all going. “After this is over,” we would say.
And the whole thing makes me angry. It makes me cry frustrated tears over feelings that I didn’t even realize mattered to me.
Sam is a St. Baldrick’s Foundation Ambassador this year, and we are so honored and glad to be working with St. Baldrick’s to honor Sammy’s life and to help with their important work. But it makes me so angry that he is the dead one — the one who represents the one in five kids diagnosed with cancer in the U.S. who will not survive.
It makes me so angry because he would have been amazing, awesome, simply fabulous as a living Ambassador.
It makes me so angry that Sam isn’t here to make videos and send messages to kids who need encouragement. He was so good at making videos. He loved helping.
It makes me so angry that his story makes people cry tears of sadness instead of tears of joy.
It makes me so angry that we thought he had a whole lifetime in front of him, and it turned out that lifetime was only eight years long.
But the one thing that I’ve realized in this new feeling of helplessness is that while I can’t serve as a “beacon of hope,” I know that the research dollars we raise with the St. Baldrick’s Foundation can be and are that hope.
As the Rabbis near their $1 million goal for childhood cancer research, a generous donor has agreed to match any new and increased gifts to St. Baldrick’s for the 36 Rabbis’ campaign.
Make your gift go twice as far for kids with cancer. Make a donation to the 36 Rabbis.
Read more about Sam and the 36 Rabbis: