Monday, August 27, 2018

The Invitation That Wasn't Sent

You are joyously invited to a 
massive celebration
Marrow Day "Birthday"

When: Today, August 27, 2018
Where: The United Center
Featured Guests: 
President Barack Obama, 
JK Rowling, 
Markus Persson*, 
Lin-Manuel Miranda**, and others

Most Honored Guest: 
Bone Marrow Donor Extraordinaire

This is the invitation that I wish I had sent out today. (We might have sent it out in advance, and we might have had to change venues several times because so many people wanted to come and celebrate with Sam and SuperMensch - so eventually we had to move to the United Center, since it got so big. And I'm sure we might have suggested that we could wait until the Bar Mitzvah in November to celebrate, but then we realized that we don't. wait. for. anything. anymore. So we went ahead with this big party.)

You know, we could have skipped the party. After all, it *might* have been an ordinary day, I suppose. Perhaps we wouldn't have even really noticed, except that we would be trying to decide which day of the week to head up to Wisconsin for a checkup. Perhaps it would be a longer checkup, and I'm sure we would stop over to the HOT unit with some gifts, to the Ronald McDonald House with some toys, and we'd have to get frozen yogurt in town too. Perhaps things would have been so "normal" and so "ordinary" that I would have had to remind everyone that this "other" birthday was coming up and perhaps Sam might have said something like, "I have to go to school because I don't want to miss my algebra class." And I might have reminded him that we can't go later in the week because he has Bar Mitzvah tutoring. And so we might have compromised on a different day, and it would have been a joyous homecoming to visit our friends at the hospital. And they would, as usual, marvel at how tall and sturdy he is and how far he's come from the little second grader who terrorized the nurses with water-filled syringes and played soccer in the elevator and added googly eyes everywhere in the hospital and was SO sick.

But none of that happened.

1, 717 days have gone by, and not one day goes by without a mention or thought of Sam in our household. We are all deeply, consciously, constantly aware of his missing piece.

I must be truthful when I tell you that the pain is mostly like a big shiny scar. It's a part of me, and I subconsciously rub my thumb over it...occasionally it will hurt, but mostly I'm just aware of its presence. 

We're not throwing a big party. I really would have loved to throw that party.

*I decided that Sam would have loved Minecraft as much as Solly does
**I'm sure Sam would share the family love for Hamilton, right?

If you're looking for a way to honor SuperMensch and remember Sam today, let me suggest a donation to St Baldricks. There are so many kids who still need us. 

welcoming the cells....

talking to his cells
From 2015: Caught Up
From 2014: Marking
From 2013: Will you Marrow Me?
From 2012: A Short Hospital Stay


  1. Still checking in on the blog. Still running and biking in memory of Sammy. Still fundraising for The Leukemia & Lymphoma Society to continue the progress toward a cure. Sending love again today.