Sunday, May 19, 2013

Remembering {day 14}

A year ago today was a memorable day. It was, like today, the last day of Sunday School. It was also the day of our spring piano recital.

And I clearly remember that it was the first time that Sam told me that his legs hurt.

May 20, 2012.

He wasn't diagnosed with leukemia until June. But on that day, this odyssey began. I remember saying, "don't worry, I'm sure you're fine" and "maybe a bath will make it feel better" and other things that didn't really work and barely make any sense any more.

I woke up this morning remembering that day.
Sam on May 20, 2012
This year, Sam is in the hospital. We are on a path that I don't think I could imagine in my wildest nightmares last May. But we're doing okay. Sam is doing okay. The road is incredibly rocky. We are not even nearly at the end of the journey. It feels more and more like a grueling marathon.

But we're doing okay.

I never imagined the love and support that would flow our way. Not because I didn't believe it was possible, but because I just couldn't envision the myriad of ways that all of you would come together to lift us up and carry us along in this river of fire. It has been the greatest blessing, and we are so very grateful. Thank you.


Today was uneventful for Sam.
We spend a lot of time keeping him occupied. In between snacks and drinks and walks and books and movies and such...I think we're doing quite well. Weekends are quiet in the hospital, so we can go downstairs whenever we want.

 The weather was spectacular, so we spent at least an hour today in the Healing Garden....well, healing. And hunting for bugs and checking out the newly planted flowers. We took a long walk (almost half a mile, I used a pedometer app to check it out) over to the cafeteria of the adjoining adult hospital (Froedert) for dinner. The Children's cafeteria isn't open on the weekends. It was a nice little outing for us, even though Sam only got cereal and yogurt!
We love all the book and movie suggestions. Tomorrow we'll play games and write notes and do puzzles and stack states and countries....and we are ready.

In other news, this happened in our family:

So proud of my David for chopping his hair off in honor of Sam and raising money for the MACC Fund along with 7 other boys from our synagogue. There were also about 10 kids who donated hair to Locks of Love. It was a pretty amazing day.


  1. Holy wow. What an anniversary. What a year. Your family has spent this year in a crucible which no one could have imagined before this all began.

    I'm perennially humbled by how your family has risen to this awful challenge, and enlivened by the stories and photos of Sam.

    And kol hakavod to David for chopping off his hair in honor of Sam! <3

  2. I remember a year ago when you began talking and blogging about it. How we all scrambled to find out what was going on and what you needed, while trying to give you space to handle the immediate challenges at hand. One of the things I think your blogs have really helped remind the rest of us how precious life is. How precious family is. How precious health is, and how precious community is. We all stand with Sam!

  3. We are so blessed to be sharing your journey with you. We're with Sam every step of the way.

  4. Wow -- can I ever relate to this post. It was right around this time last year that Clio started complaining that *her* legs hurt, and started regularly having mysterious fevers that would come and go, with no other symptoms.

    Isn't it strange to think about how different our lives were just a year ago?

    I think about you guys all the time, and send continued good wishes and thoughts to you all.

  5. Michael, you sure make some good looking kids! My goodness, David looks terrific! What a mitzvah!