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.

Wishes

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.

Directions

There are days when I can't budge. I am angry and cranky and the tears come and come until my head hurts, and then they come some more. I weep and I rage and it's not fair to my family. They take the brunt of my outbursts.

Then there are days when I want to do something. Anything. I don't care what it is. I just want progress.
I will share the fundraiser for the family of the newly diagnosed child because I know what it's like to be there. To be scared. To be full of hope.
I will promote the collection of shoes that are sold to raise money for childhood cancer research.
Blood drive? Sure. I'll help with that.I'll give blood. I'll pass out juice to the donors.
I will buy cookies at the bake sale for childhood cancer research on the folding table down the street put on by the little girls who went to school with my son and miss him on Valentine's day. I do too.
I'll shave my head.

I'll do anything.

I am pulled in a million directions and I wonder if I am spread too thin to do any good.

Kind of like the childhood cancer community.

I suspect Jonathan Agin-lawyer, advocate, bereaved dad, writer-would agree with me. I admire him. First of all, he's smart, he's a lawyer, he's an excellent writer. He and his wife have helped to raise hundreds of thousands of dollars with The Cure Starts Now/Race Against the Odds.

Next to him, I know nothing. I am no one. I am a mother. Sure, I went to college. But I was educated as an elementary school teacher. I don't know how to make medicine, money, and politics work together to find a cure for children's cancers.

Mr. Agin's been tweeting a lot lately. Cryptically. His tweets point out problems I already know exist: The childhood cancer community is "insular" and needs to "gain efficacy." Each tweet is part accusation, part open-ended question.

I don't know the answers. I wait with bated breath for new tweets that will hopefully reveal some sort of mastermind game plan.

How, Jonathan? Tell us what to do.

It's not all rainbows adorable bald heads

I should write something. No, not because I think you expect me to. Because I want to. Several times a day I have thought-about Sam, about cancer, about siblings, about grief-and I think, "I should write that down." Writing helps me to process my thoughts and emotions, and I want to share this with you. I don't want to hold anything back. I want you to know how crappy it is live without Sam. I also want to remember. I want you to remember. If we stop thinking, talking, writing about him, then was he ever really here?

It's been almost 2 weeks since I put my thoughts on paper-that's how I used to explain writing to my students. Whether they were in 1st grade or 6th grade, they were always afraid to write. "Don't stress out. It's just thoughts on paper," I would tell them. There's always time later to go back, reread, fix, adjust, perfect. "Just get your ideas out before you forget them."

Here's one idea spinning in my head today-for the past 6 months, really: Have you ever heard the term, "Rainbow Baby?" I heard it for the first time this past summer, when Sam was on hospice. I stumbled across an on-line magazine, Still Standing, full of articles about child/baby/pregnancy loss written by bereaved parents. I was lead there by Angela Miller, of A Bed For My Heart, author of You Are the Mother of All Mothers. I was comforted by most of the writing. I felt less alone in reading about other parents' experiences. I felt more confident that I would indeed survive the death of my son because these other parents were surviving. Parents said they not only did they survive, but they were thriving even through their grief, and finding joy in the darkness. I held onto that. I still do. 

Anyway, back to this idea of a Rainbow Baby. A Rainbow Baby is the baby one has after experiencing pregnancy loss. 

Oh. 

After Abby and before Sam there was another baby. He died inside of me at 16 weeks. We didn't name him because he was miscarried, not stillborn, and therefore there was no death certificate. But he was. 

And then there was Sam. Our miracle baby. Our longed for, wished for, prayed for Rainbow Baby. 

Our Rainbow Baby died. I hate that term, Rainbow Baby. I can't be alone in that. What about the moms and dads who are never able to bring a baby into the world alive? I almost can't click on the link in my Facebook newsfeed for Still Standing because of that stupid term (unless the article is by Angela Miller, of course). I can't stand to read about how someone is "expecting a Rainbow Baby," as if everything is going to perfect from now on. Bullshit. I want to sit that glowing pregnant mama down and gently, taking her hands in mine, break the sad news to her. Just because you bring a baby alive into this world, doesn't mean it will always be healthy and alive. Diseases happen. People happen. Freak accidents happen. Be aware that you are vulnerable to child loss for as long as you breathe.

Just this morning a friend (a really good, fierce, prickly on the outside, soft on the inside friend) told me that someone had asked her why she works so hard and spends so much time raising awareness about childhood cancer and organizing fundraisers for childhood cancer research when none of her children are sick. "Why do you care," they asked? She was shocked by this question. What's the answer? Can we only care about something that affects us directly? If that's true, why then do we give to the Red Cross to help hurricane victims when a hurricane hasn't touched our home? Why do we give to the food bank when we are not hungry? Why do we donate coats and blankets when we are not cold? 

I'm sure there are many reasons why we care and therefore give of our time and things and money, but the one reason that stands out to me is that we feel vulnerable. We see ourselves in that parent who can't afford a new, bigger coat for their child this winter. I think we are aware on some level that this could be us. 

Childhood cancer is worse than natural or economic disasters. You can't control for it by carefully choosing your place of residence away from regions prone to childhood cancer. You can't avoid it by taking a second job to ensure financial stability to ward off cancer. Cancer doesn't befall children of any particular ethnicity. Cancer doesn't give a shit how much money you make, where you're from, what religion you practice, or how educated you are. 

You care because you are human. I'm not sure if I believe in G-d anymore, but thank G-d for that. If you didn't care things would be awfully lonely for the Jeffers family and all families touched (crushed, unraveled) by cancer. One of the reasons, really the biggest reason, we are surviving this is because of our community-our in-real-life and our virtual community.

You know what's coming, right? I'm going to ask you for even more help.

Over the summer, I discovered this group, 46 Mommas, that raises money for St. Baldrick's, a childhood cancer foundation that funds grants for research, by shaving their heads at an annual Shave for the Brave event. I knew then that whether Sam survived or not, I would be a part of that group. To shave my head with such a large group I felt would have such a large impact, financially and in raising awareness. Then there's the symbolism of it. For some moms it's solidarity with their child who lost their hair to cancer treatments. But Sam never went bald, so for me it's more about standing before you with nothing to hide.

The shave event is in Boston on July 27th, so there's plenty of time to share this with your friends and family, and plenty of time to save your pennies to make a donation. Please share this link to my fundraising page: http://www.stbaldricks.org/participants/mypage/668136/2014. You can also make a donation by phone: (888) 899‑2253. You can even mail a donation to St. Baldrick's: St. Baldrick’s Foundation, 1333 S. Mayflower Avenue, Suite 400, Monrovia, CA 91016. Please include my  participant number: 668136.

Even though it's not your child and hopefully never will be your child, please care.

A lemon tree, a roller coaster, and the 5 stages

During one of our visits with a hospice counselor soon after Sam died we were told (wisely) to be prepared for a time that would come where we would feel that the rest of the world has moved on, and left us alone in our grief.  The cards and gifts would slow down or stop; the visits, the special events, the overt outpouring of love, kindness and understanding would gradually meld with the reality that “life goes on”.  At least, that’s how it would feel to us, and we likely wouldn't be ready to just “move on” at the rest of the world’s fast pace.

I think to a certain extent that has happened, although we have such good friends and a kind community that it hasn't been nearly as bad as it could be.  From cookies sent from relatives to camaraderie on long hikes, people are still showing us lots of love.  And this past weekend, for example, our temple—Congregation Beth David—planted a lemon tree in Sammy’s honor.   It was really nice, 12 weeks after his death, to still see people caring about Sam just as much as us.  

After the lemon tree planting Sabrina and I went to visit Sam’s grave.  Sabrina had been back several times, but this was my first time back since the funeral.  I had thought about driving out there many times in the last 12 weeks but I just couldn't do it.  Throughout this grieving process I have found that sometimes I’m an absolute rock, and to an outside observer I probably look cold or heartless because I’m “dealing with the loss of my son so well”.  On the other hand, there are times when I am a complete jellyfish, nothing but raw nerves and emotions, and all of them bad (denial, anger, sadness, etc.).  Surprisingly, at Sam’s grave, I held it together.  I didn't cry or lose it.  And I began to think for a moment that maybe I’m at the mystical (mythical?) stage of Acceptance.

But as soon as you start to think about acceptance, you (at least I) get angry again.  Angry for the unfairness of an 8-year old’s death and angry for allowing yourself to feel the “pleasure” of acceptance.  Guilt for even entertaining the idea of “moving on”.  Sadness when it hits you like an iron shovel (for the umpteenth time) that your little boy isn't coming back.  And so it goes.  Back on the roller coaster of the 5-stages.  But with each ride the nausea seems to lessen, the ride gets a little less scary, and the length of time between rides gets a little longer.

Broken

Monday morning I jumped in the car with the teens for a 2-day, 2-school tour. It was the first time I went any further south than Nipomo since we stopped Sam's treatment because it wasn't doing any good (did it ever?). As we approached that invisible hurdle, the tears and quiet sounds I can't describe but feel desperate began to well up. I cried intermittently from Willow Road to Winchester Canyon. Either the teens were too into their books and knitting, or they are used to me sniffling all the time, because neither of them said anything. After the Winchester Canyon exit I snapped to attention, remembering our goal was visiting a college and I didn't know where I was going so I needed a kid to navigate.

We did fine visiting schools. We had the usual. "Sam should be here," and "What would Sam think?" moments (especially as we ate lunch beside a pond that was home to ginormous koi, who I am convinced were capable of leaping out of the water and snapping bits of sandwich and chip out of our hands) but we did okay. We even enjoyed ourselves.

Thursday I finally "forced" Teen the Elder to go to the doctor to have his wrist checked out. We thought he sprained it in late November (He fell. He was running backwards. For fun. Not for fitness.), and 6 weeks later it just didn't seem to be getting any better so our pediatrician sent him for an xray.

It's broken. Guess where the pediatric orthopaedist's office is? Santa Barbara. Across the street from the hospital and clinic where Sam received most of his treatment. When I heard the address I think I started to hyperventilate.

We made an appointment for next Wednesday so I had plenty of time to dread it for many reasons-How bad is the break? Does he need surgery? Will he be able to play saxophone and piano? When I see the hospital and clinic will I freak out?

Minutes after setting the appointment the receptionist called me back. "We have an opening tomorrow? Can you come down tomorrow?" Of course we can.  Less time for anticipating how awful it will feel to be in that neighborhood again. Kids are still on break, so back to Santa Barbara we went.

Getting to that hospital area from Southbound 101 is a bit roundabout. You have to exit the freeway and then get back on northbound for one exit, but I did it once a week for 10 months, so I'm a pro.

I did okay. Yes my heart was pounding. Yes, my breath was fast and shallow. I felt anger. And sadness. And longing. But so much anger.

The big, lovable goof will have surgery on his hand in 10 days. There will be a pin in his scaphoid and he'll be in a cast for 6 weeks. It's possible he'll need a bone graft.  He will play saxophone and he will play piano, even with a cast on. He may need physical therapy but he'll be just fine.

And I'm "fine." I'm angry. I'm sad. I don't feel like doing much of anything, but I do as much as I can. The fight continues, and apparently our current weapon of choice is pancakes. Yes, that's right, pancakes. The Lovely Lemonade Ladies are holding a pancake breakfast and raffle in honor of Sammy. A complete breakfast (pancakes, eggs, sausage, coffee, and juice) is only $5 for adults and $3 for kids! Eat all the pancakes you want! All proceeds will go to Alex's Lemonade Stand Foundation.

Sunday, February 2nd

8-11:30

The Grange

370 South 13TH ST

Grover Beach, CA

If you aren't local to Grover Beach, you can get involved by donating to the event. You can also donate to St. Baldrick's via #36 Rabbis in honor of Sammy Sommer (son of my friends Michael and Phyllis-see how they're holding up here.). If making a donation is not in your budget right now, then share this information with everyone you know-Facebook, Twitter, email, blog, you could even talk about it in real life!

The fight also involves getting our government to pay attention. Tony Stoddard (Cole's Dad) is doing an excellent job at that. You can sign his petition, and make phone calls (White House Phone: 202-456-1111. Calling Hours – 9:00am to 5:00pm Eastern Standard Time Monday through Friday). The focus right now is on getting the White House lit or decorated with gold in September. Good things are happening.

Frozen

Or at least I want to be.

I realize I'm trying to freeze time for myself. I'm helping my surviving children to move forward by supporting their endeavors at school and encouraging Teen the Elder as he applies to colleges and completes the testing the schools require (770 on his Literature and Math 2 SAT subjects tests, and 800 on his Physics SAT subjects test-it's my blog. I can brag if I want to). John has made progress with setting up his home office with my assistance. But me, I'm frozen, content to sit on the couch all day.

I think I figured out why I don't feel ready to go back to work. I mean besides the crying off and on all day long. Besides the lack of focus and lack of sleep. Besides the angry outbursts. I don't want to go anywhere or do anything. I go for walks. I take care of my family-plan meals for the week, shop, cook, do laundry. But none of that's my life really. 

You see if I go back to work then I'd be moving on with my life, and if I move on with my life then the space between me and Sam will grow. Right now I don't feel too different from the way I felt in the moments after Sam died. And if I stay on the couch and do nothing more mentally taxing than attempt for bazillionth time to beat level 147 on Candy Crush (curse you, Candy Crush!), then it's as if time hasn't passed.

But time is passing. 11 days after Sam's death we experienced our first Halloween without him. In November we observed John's birthday, Chanukah, and Thanksgiving despite the hole in our family. We've marked one month since he died, then two. We went on our first road trip without him, and ate out for the first time ("Table for 5, please...I mean 4."). In December we went to the movies as a family of 4, and talked about the last time we had been there with Sam. 

At the start of each month I've woken up thinking of Sam and how this is a month he will never see. This is a month in which we will be entirely without him.

2013 is coming to an end. Sam was here for 2013. We sipped sparkling apple cider at midnight New Foundland time, and hoped 2013 would bring the shrinking or at least stabilization of his tumor. We didn't get what we wanted. One could argue that 2013 has been the absolute, hands-down, worst year of my life. But I don't want it to end.

With the end of 2013 comes the start of a year Sam will never see; the continuation of a year of firsts we do not celebrate. 2014 propels me into a future without Sam. 2014 pulls me further away from him, but no closer to anything else I can see.

That's it. There will be no wise conclusion to this post. Don't expect a, "Happy New Year!" from me. I am frozen.