Sunday, April 13, 2014

Let it Go

We had no plans for Passover. No one wants to do anything. My mother has always hosted the Seder and led the planning, and this year, as her voice broke, she told me she didn't want to do it. I offered to do something, anything, even just a nod to tradition, in our home. No takers. So I let it go (go ahead and sing. I am one of 4 people on the planet that has not seen this movie. We no longer have a child of the age that enjoys animated features).

Passover 2012-Pre-Diagnosis
We used to be the Friday night service type. On a regular basis Abby, Sam and I would attend shul. Sam sat with his friends in the front row, and Abby and I sat with my friends, the parents of Sam's friends, right behind them-within shushing and blessing distance. Three times a year we hosted oneg Shabbat after services in honor of our children's birthdays (Oneg Shabbat means joy of Shabbat so we brought snacks and treats because food = joy, right?). We always had cake, and it had to be from costco.

When Sam was placed on hospice in June 2013 we stopped going to services. Services came to us most weeks. Rabbi Linda and Dr. Bob (our shul's guitar playing neonatologist song leader) would come on Friday afternoons a sing Shabbat songs with us. 

I don't remember when it was that they stopped coming, but at some point Sam became too tired and uncomfortable to have people in the house. I still lit the candles and we said blessings and nibbled challah and I tried to remember the grape juice. Sometimes I would remember to buy it but Friday night would come and I would forget we had it.

After Sam died, I continued to observe Shabbat with John, Abby, and Ben in this very small way-Light candles, say blessings, nibble challah, sip juice-Oh my goodness! Look, there's juice I bought before Sam died. I forgot to use it. Such a heavy feeling. He was here. Now he's not. How is that possible?

Chanukah came and we observed. We lit candles. We sang blessings. We took photos. We opened gifts. I even bought gifts for my surviving children. I'm impressed by myself now.

It was sometime after Chanukah the Shabbat observance just stopped. I haven't lit a candle, nor sung a blessing in months now.

Abby asked once, "Are we even jewish anymore? Ben's an atheist, and we don't do anything."

If Abby asked me to return to temple, I would. If anyone, other than me, in the family showed any interest in observing Jewish holidays, I would. But they don't. So I let it go. And the days pass. They are all the same. The only differentiation of one day from another is whether or not I have to set an alarm. 

At the beginning of April, something started to stir. Yes, it was Sam's birthday, and it was hard and sad and still is. I should have a 9 year old, not a dead 8 year old. But that's not what caused the stirring.

As I watched the live feed of the 36 Rabbis Shave for the Brave, as I listened to my old camp and youth group friends and their friends singing and praying-I felt a pull. Those familiar melodies and words are powerful. And if I'm honest with myself, I'll admit, I miss them.

But I can't go back to temple. He was there. Now he's not. I don't think I can bear to watch his friends grow up. What would be the point? 

So I've been thinking about Passover. My mother always reminds me that Rabbi Mendel said that all the Torah really says about Passover is that we must eat matzoh. To remember what our ancestors went through, simply eat the bread of affliction. (Now I will not enter into any kind of discussion whatsoever about the validity of of my retired rabbis ideas about observance. I am hanging onto my Jewish faith by a thread here, so just let it go.) 

That simple idea drove my Google search of "alternative Seder ideas," (which resulted in pages of websites to visit with ideas to "liven up your Seder," and "take the boredom out of your Seder"). Too complicated, and boredom is not the issue here. The one result that stood out to me as a non threatening way to dip my toe back in the waters of Judaism was a "Chocolate Seder." What drew me even closer was that the Haggadah for said Chocolate Seder comes from Hillel of UC Berkeley (Go Cal! Surprise! Ben's going to Cal next year. He forgot to mention his Nobel Prize for Physics research involving a boat made entirely out of duck tape and cardboard on his Stanford application, so they rejected him.). 

Martha Stewart's macaroon recipe never fails me
I tested my idea out on Abby. "How about if we have a Seder entirely comprised of Passover desserts? Bubbe's matzoh candy, my dark chocolate macaroons, brownies..." Her response was an enthusiastic, "I like chocolate." That's enough for me. It is on. 

What would Sam have thought? He would have been bouncing off the walls with excitement.

P.S. Not that anyone was thinking it, but if you were going to comment that a Chocolate Seder would not be kosher for Passover, Let. It. Go.

Tuesday, April 1, 2014


From John, March 31st, 2014:

I’ve been feeling pretty good lately.  We had a wonderful memorial celebration for Sam at Happy Time pre-school, where “Sammy” the Samasourus (a new playground Dinosaur) was unveiled, and a lemon tree was planted in Sam’s memory and honor.  And the cutest little wooden bench, with a memorial plaque, was made by a Happy Time family’s grandfather.  And I didn’t even cry.

Ben and I drove out to Sam’s grave recently, while we were in the area.  And neither of us cried.
Abby and her friends made a really cool camo-cake and Crabby Patty cupcakes in honor of Sam’s upcoming birthday on April 2.  He would have been 9.  I loved the cake and the mini-celebration we had.  And I didn’t cry. 

And yet today, sitting at my desk alone and working, it hit me.  Yes, again, like an iron shovel.  He is gone.  He is not coming back.  I cannot see him.  I cannot touch him.  I cannot hug him or hold his little warm hand.  I cannot kiss his cheek or lips.  I cannot talk to him and have him talk back to me. 

And so today I cried.  Because sometimes it hurts so incredibly bad.  The cold harsh reality of life without Sam comes up and slaps you in the face really hard from time-to-time.  When you least expect it.  And you have to just sit there and take it.  You can’t fight back against the reality of him being gone.  You’re helpless to that past.

I can look at his pictures.  I can put little blue M&Ms in a special jar for him and tell him that I saved them just for him.  I can talk to him when I feed his goldfish and let him know she’s fine.  I can let him know about all the things we’re doing in his honor to raise awareness for pediatric cancer.  But he won’t respond back.  He’s gone.

During his life post-diagnosis, every time we got to make a wish (when we found a lucky penny or blew out birthday candles) we all would secretly wish for the same thing:  To have Sam’s cancer go away and for him to be healthy.  This Wednesday, on April 2, I will once again make a wish.  I will wish that no other child—no other family—no other community—will have to go through what we have.  I will wish for the continued strength for my family and friends to continue the only kind of “fighting back” we can do now:  Raising awareness of childhood cancer, working towards a cure for pediatric cancer, etc. 

The world can be a cold, harsh place sometimes; but fond memories, family bonds, good friends, kind deeds, warm hearts—and hope for the future—all go to brighten the days and let us keep marching on. 

Happy Birthday Sam.

8th Birthday Celebration #1 (friends), 2013

8th Birthday Celebration #2 (family), 2013. As he most loved to be: in pajamas, partially nude, full of joy.
8th Birthday Celebration #3 (temple), 2013

April 1st, 2014:

It probably won't surprise you to read that John and I are different. At the dedication of the Sammysaurus, lemon tree, and bench, I cried. When I visit his grave, I cry. Before we cut into the camouflage cake, I cried. 

I'm not writing these days because what would I tell you? "I cried."? 

This morning when John went to feed Goldie, he found her delicate orange body floating on the surface-lifeless. Goldie is dead. We buried her beneath the rosebushes in the front yard before I took the teens to school.

Rest in peace, Goldie
Tonight my friends, Michael, Phyllis, Rebecca, Eric, Jason and 70 or so of their colleagues will be shaving their heads to raise money for childhood cancer research and to expose their grief. They have raised over $540,000 so far. I will be watching them tonight here at 7:45PM Pacific time.

My head shave with the 46 Mommas is scheduled for July 27, 2014 in Boston, MA. In honor of what should be Sam's 9th birthday, April 2nd, 2014, I will give $9 to St. Baldrick's for each donation made to my page through midnight on Sammy's birthday.  In the last week since I offered this incentive there have been 21 donations totalling $749. My contribution of 21 x $9=$189 makes the total for Sam's birthday $938. The link is in the upper right-hand corner of this page. There is still time to give.