Saturday, September 28, 2013

Heart - BMT +32

I realized about 15 or 20 days ago that I had missed the opportunity to connect each day of BMT to a Psalm or explore the gematria of each day's number.

I've probably had other things on my mind.

But today is one of my own favorite number/word connections. The Hebrew letters that make up the number 32 are lamed and bet, which spell the Hebrew word "lev," which means "heart."

Oh, how this whole business has been a test of our hearts....our hearts which are filled up with the love of our family and our community, of all of you who continue to care for and support us....with the heart of our family sometimes here and sometimes there....hearts saddened for the friends we have made and lost....hearts full of joy for those who have completed treatment and live happy, healthy lives...

Today, the 32nd day of Sam's new life, we continue to be grateful for his progress and for the gift of each day.

Yesterday, Sam had one of his heart's desires fulfilled. All summer, he's been looking forward to September 27th, when Cloudy With A Chance of Meatballs 2 came out. The movie trailer was a family favorite all summer! ("There's a leek in the boat!") I was truthfully a little shocked that the doctors were okay with a movie for Sam, but I was not going to argue. So off to the movies we went!

We weren't sure how crowded the mall would be, so we decided to try a mask (it really didn't feel mask-worthy afterwards so it was only for a bit) and Solly wanted one too.
One of the things that we're realizing is just how much strength Sam will have to build up. Carrying the fluids and pump in his backpack is sometimes even too much for him. Since the tubes are connected to him, it's easy for someone else to help him out and carry the pack. Here's Yael, helping out...
I made them hold hands in case Yael decided to wander off with Sam's tubes attached to her back!
After the movie we went back to RonMac and Sam took a nap!

Today started out a little bit differently. Sam knew that his siblings were otherwise occupied today and his pass would be with just mom...and he had a few moments of feeling sad and crabby about that, as well as, I think, the aftereffects of the exhaustion of Friday. We both took a long nap for most of the morning and by 2 o'clock he was feeling a little more ready to go out. Unfortunately, it was still very sunny, so we only were able to spend about 20 minutes at the zoo. Also, Sam wanted to rest quite a bit while we were there...
Clearly we were underdressed. Who knew the zoo was black tie?
Sam asked to go to Starbucks, and what self-respecting mama would turn that request down? He likes those madeline cookies:
I can't tell you how hard it is to watch him be so tired all the time. We're going to have to work hard to build up his stamina and strength. I can't quite tell if it's the emotional impact of leaving the hospital, the physical requirement of the backpack, or some combination of both. I'm grateful that we've had these trial runs to help him acclimate to life in the "outside world." Most of today's outing was actually spent resting in our room at RonMac.

And so that's where we are, today, at the heart of it all....


  1. I love those madeleine cookies, too. Sam has great taste. I just know that very soon you will be stronger, Sam. And not quite so tired so quickly. I hope you had a great time at the movie. I keep praying for your return to health and feeling wonderful.

  2. When his body is fully ready, you won't be able to keep up with him, G-d willing. Refuah shleimah

  3. To Phyllis Sommer, "just mom": you have incredible grace and strength. I admire you daily as you stand watch over your boy.