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.
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 Ambassador this year and it makes me so angry that he is the DEAD ONE.* It makes me so angry because he would have been amazing, awesome, simply fabulous as an 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 8 years long....
*Please understand that we are so honored and glad to be working with the St Baldrick's Foundation this year to honor Sammy's LIFE and to help with their very important work. 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 can and ARE that hope.
|Collecting movies from the mail at RonMac. He was so proud of how many you all sent.|
|Helping to unwrap all the RonMac movies and label them.|
|Some more of those donations. Love that look on Solly's face.|
|Learning to take pills. He was very proud of the skill, and we talked about how he would be able to teach other kids.|