One Year

One year. The passage of time since Sam died means nothing and everything to me at once. 

For an instant I can capture the memory of Sam's last moments as though they happened yesterday, yet I feel like I've been living without him for a very long time.  

That Sam is gone at all still leaves me stunned, yet there are times when I can scarcely believe he was ever here at all. 

On the one hand I am devastated and immobilized, on the other even I am dumbfounded at my ability to continue to live this life. 

Recently I was confronted with the idea of my own mortality. Like many women, I was called in for a second look after my annual mammogram. This was a first for me, and women don't talk about this frequent request for additional images so I assumed of course that I had breast cancer. I assumed I, like Sam, would die of my cancer. 

Now all this drama happened over the course of only 3 days but at some point while I was imagining my demise, weeping more than usual, and feeling really sick to my stomach, I realized that all of this distress I was feeling over the possibility that I might have cancer might mean that I actually want to live? Why wouldn't I welcome an end to missing Sam? Why wouldn't I feel relief that rather than decades without him it might be over over sooner rather than later? Do I like living? I thought about all of the work for kids' cancer that I have yet to do. The foundation has only just begun. My surviving children deserve to have a mother after losing their sibling. My husband couldn't lose a wife after losing a son. My parents. Oh the horror. To think my parents would have buried their eldest son, their youngest grandson, and their daughter. Have we experienced enough loss yet? Have we filled our quota?

Dare I also admit that in addition to desparately wanting to stick around for my family and to continue to advocate for more funding for childhood cancer research, I also like life? There I said it. For selfish reasons, I want to live. I love my family. I need more time with them. I love my friends. I want to do more hiking and backpacking. I love teaching (yes, I am teaching again. Different story for another time). I like my post-apocalyptic TV shows, movies, and books (but I don't have cable, so PLEASE don't spoil The Walking Dead for me).

But it has been a year, and so John and I have been thinking about what to do to mark this date. It would be traditional for us, as Jews, to unveil Sam's headstone at this time. We can't because in true Edelson-Jeffers fashion we 1)Procrastinated, and then 2)The process of ordering the headstone did not go so smoothly. So this weekend, while Ben was home for a visit, we went to Sam's grave and laid stones on the temporary plastic and metal marker, and spent some time. Tomorrow we will again visit Sam's grave and place stones (and a pumpkin), and we will spend time working on Sam's vegetable garden. 

Sam cheffing up his Circle Bar B chili July 2013

Before Sam died it was a wish of his to grow some food-any good chef wants fresh produce for his cooking, so last summer we planted a garden. He got to see it sprout and grow, and he lived to taste the carrots and tomatoes. He died before the corn was ready.

Sam cooking in 2010

I didn't plant this year. What would be the point? I guess the point is that it was something he loved, and we honor his memory by continuing the tradition even though he is no longer here. So even though it's Fall, in this part of California it rarely freezes so I think we're pretty safe to amend the soil, plant the seeds, erect the fencing(to keep Chance from digging it up, because you know, he wants to), and dedicate the garden to the little boy who loved food and cooking (and eating).

Sam and Chef Jacob, July 2013

All it takes is a Community

     John and I would like to thank everyone who supported the Lemonade and Love for Sam Luau last weekend…all of you who helped organize, set-up,  run a stand, or clean-up; or who donated time, money, and energy to this great event—Thank You!!!  I don’t know how many people ended up coming, but it was a lot.  We raised a lot of money (still being counted) and a lot of awareness for the childhood cancer cause….and we couldn’t be more proud of everyone who participated and contributed and helped make this happen.  Many of you came from near and far to be a part of it and we want you to know that we appreciate each and every one of you and all of your efforts!

     Speaking of raising awareness and money for childhood cancer, for the last few months John and I have been working on setting up our own non-profit charitable foundation.  We are proud to now be able to announce that the Samuel Jeffers Childhood Cancer Foundation is a reality!  We received our Letter of Determination granting us 501-c-3 tax exempt status from the IRS on Tuesday this week, culminating several months of paperwork and some deep thinking.

     We thought long and hard about the pros and cons of forming our own Foundation.  We are aware that there are many other such foundations—often formed by families just like ours, who have lost a child to cancer.  And we are aware that we are perhaps contributing to the problem of having too many organizations spread too thin to do much good.  We seriously considered just concentrating our efforts on only one or two childhood cancer organizations, so that we could have the most impact with our limited resources. 

But in the end, we decided to move forward with Sam’s Foundation (whose tagline is “Cooking up a Cure for Childhood Cancer”) because we would like to make an impact on a somewhat narrower—but desperately in need of help—segment of the childhood cancer landscape.    

     One of the most pressing problems with childhood cancer is that childhood cancer is not just one disease.  There are many different types and many more subtypes, each one requiring specific and unique research to develop the best method of treatment. 

     While we have (very thankfully) been successful at treating certain types of pediatric cancer—thanks to increased awareness and a modicum of funding—the success rates for many of the other types of pediatric cancer are not good.  These rarer types of childhood cancer are not so rare when viewed as a whole, as together they account for a good portion of all childhood cancers.  Because so few children are diagnosed with these specific rarer types, little research is done on each one separately. 

     A sort of “vicious circle” therefore exists with respect to most types of pediatric cancer:  They are rare enough that little awareness exists and very little or no research is being done; therefore no new drugs or therapies are developed; therefore children affected by some of these types of cancers are sentenced to almost certain death.  No child should ever have to face that kind of future.  We hope Sam’s Foundation will be able to make a positive impact on some of these rarer types of children’s cancer.

     Having our own Foundation doesn’t mean that we are abandoning Alex’s Lemonade Stand or St. Baldrick’s.  On the contrary, we will continue to support these great organizations and their missions to end childhood cancer.  They are doing great work and they continue to run “lean and mean” in the fight against kids’ cancer, by holding their expenses down and contributing an above-average amount of donated funds to directly support children’s cancer. 

     We will partner with these organizations where we can and fund our own research projects when feasible, and together we hope to make an impact that will change the lives of children forever.  And we thank all of you for helping us in this mission.

Here's a sampling of the community that made this event happen.

The Lemonade Moms: Erl K., Harmony B., Michelle D., Mary M.

The crowd

Gratitude

I'm not good with words, and even if I was I can't identify what I'm feeling now-except for the gratitude. Gratitude that my husband and teenage children would come all this way with me and be in this awkward position of sharing our tragedy with the world when the three of them are such private people. I think they thought this this going bald fundraiser was all mine, but really it's ours. It's taken the combined effort of our little family, our extended family, our friends, our friends' friends, and strangers. 

I am grateful that John and Ben and Abby came along with me to Boston. They've met a flood of people from various eras and experiences in my life. Those people have taken pictures of Ben and Abby and John, they've hugged and shook hands, and probably looked at them with sad eyes, and I know it's been overwhelming and uncomfortable.  

And let's talk about those people who came to support us yesterday (or the folks who couldn't come but donated to St. Baldrick's, and the ones who sent messages of love, or those who are holding down the fort back home by caring for our pets, and taking in our mail). We were carried along yesterday by our extended family who traveled from the Albany area and Alexandria, VA to Boston to love on us, my high school friends from Connecticut, Maine, and the Boston area, youth group and camp friends drove from as close as Medfield, and flew from as far as Chicago. 

I am flabbergasted that these people are still with us, physically and emotionally. It's not just donations that prove they are still with us. Although that evidence is irrefutable to the tune of over $14,000. They didn't turn and run when Sam was diagnosed. They didn't shut down when Sam died. 9 months later they are still here with us and they say his name and share their stories of Sam. Even if they've never met him, they have stories of their kids playing a game because Sam would have liked it, or memories of photographs I posted. 

What's huge to me is that many of them have taken this cause on as their own. Their perspective on childhood cancer has been altered. They no longer think of it as a rare but highly curable (90% a sign on the T read) childhood disease. Sam's illness and death touched them in such a way that they now feel compelled to tell his story to their friends and family. Yes, they shared my 46 Mommas fundraising link on Facebook and retweeted my tweets, but they've also held fundraisers at work, and their kids have donated birthday money. We've broadened the circle of awareness, and as we increase our reach, we raise raise more money, and ultimately I hope that we become impossible to ignore.

I am also grateful for my bald head. It may not be evident if you only know me through the internet, but I am a bit of a quiet person. It is my hope that my shocking appearance (along with the button-"Ask me why I'm bald.") will prompt people to start a conversation with me (I'm quiet, but once I get started talking, I think my friends will attest, I'm a talker). It is also my hope that if people are simply staring at my bald head that I will have the courage to ask them, "Are you wondering why I'm bald?"

Flicker

You've probably noticed that I don't write much anymore. It's not that I don't have plenty to say. It's just that most of what I need to write about is not mine to write about. The teens have big struggles and that's what's hurting the most right now. But they are teens, so I won't share their heartache with you. That's their job, if they choose to do it.

Sure I have plenty of fall-out of my own, but much of that is already so well spoken about some of the other bereaved moms I know (Phyllis Sommer and Libby Kranz to name a couple). 

And then there's the mundane fall-out that most, if not all, cancer families suffer-Money. The result of my extended leave of absence from teaching is that the district has elected to release me. I was told I could reapply for my job. I certainly could have applied for employment with other districts. I chose not to. I don't have the energy to sell myself to anyone at the moment. I don't know if I ever will. 

There is also the issue of the spark. That little, bright light inside of a teacher that pushes them to teach. The drive that urges a teacher to continually return to a job that doesn't offer financial rewards, provides endless frustration, but still manages to feed her soul. My passion for teaching, the thing that made it feel like I never worked a day in my life, is lost. I think I know exactly when it happened too-May 29, 2013-the day we were told there was no hope. The bright little light inside of me was extinguished. It didn't fizzle or sputter. It didn't grow dim. It disappeared.

Around the turn of the year, a time when it would have been quite logical for me to return to the classroom, I began to worry about that spark. I looked for it. I felt for it. I decided to give myself more time, and John decided to support me. Given that it was also around this time that most of my income began to go to pay the sub, this had to be a joint decision. 

After a couple more months without even a flicker from my spark, I realized that there was another spark, a different passion. I'd been taking care of these kids who are hurting so badly. I'd become a part of a community raising awareness and raising money for childhood cancer causes. So it's not that my light had gone out, it was relocated. My drive was repurposed to my family and a cause.

Before I learned that my contract would not be renewed, I decided not to fight this new arrangement of my light. I also decided that if my contract was renewed for the fall that I would give teaching a chance. 

I thought it was possible that upon my return to the classroom that my passion for teaching might be unearthed-by being there. By doing it. By the kids. So essentially I left the decision of whether or not I should still be a teacher up to the universe.

The universe has cast its vote. My emotional energy belongs first, here at home, and second, with childhood cancer. I am not afraid to work hard at whatever job I find to pay the bills (Go Cal!)-I don't want a free ride. I don't want to take it easy.  I just have to keep my priorities straight: Keep the family going, make the world a better place, pay the bills.

Summer 2012, 2 months prior to diagnosis. We went to see family & friends in NY & CT blissfully unaware.

Unless you are a complete couch potato, you can raise awareness.

Mother's Day

I don't have a Mother's Day post, but John does. I always thought that Mother's Day, like Valentine's Day and Father's Day, is not a real holiday. I call them Hallmark Holidays. You know, holidays made up by companies that make money off of holidays. Don't get me wrong, I've always enjoyed the handmade cards and gifts that came from my children. I treasured their joy, their love. I no longer have a little one in elementary school making gifts and cards. Childhood is suddenly over. I get to think about that every day. I get to miss him every day. I get to question whether I did enough every day.

John's thoughts-

Mother’s Day. 

It is so sad going through a Mother's Day without Sam.  I can honestly say that this is the first "going forward" milestone that has hit me.  I hadn't been feeling too bad about some of the others, even Sam's own birthday, but for some reason him not being here for Mother's Day is getting to me.

I think one reason is that for last Mother's Day, he had woken up early and made Happy Mother's Day pictures for all of us.  At the time, we just thought it was Sam being "cute", making something for everyone, which was definitely not out of character for him.  But now, looking back, I think it was a sign of his mental health going downhill.  There was something wrong and he was starting to get a little confused.  It was just a few weeks before we were told he was going to die, and we had just begun to notice a change in him.

His balance was off, and he was tripping and stumbling a bit more than he used to when his little rubber clogs would catch on the ground.  Sometimes he would seem to not be paying attention to us, seeming a little aloof and "distant" from time-to-time.  At first, we thought it was just that he had a cold, and the congestion (combined with the tumors) was just exerting a bit more pressure than usual, and it would get better.  Then it got a little worse, and so we thought maybe it was the increased keppra (anti-seizure) dosage, which can make you a little foggy, as your body adjusts.  Then we thought maybe it was "chemo brain", and the latest round of chemo was having a different or perhaps cumulative effect, which would go away soon after we halted that round.

But when I expressed my concerns to Dr. Greenfield at Cottage Hospital, he actually took it very seriously, so much so that I found myself uncharacteristically "arguing" with him about how it was probably just the cold.  And he said "well, maybe, but maybe not."  He knew.  And I was in denial.  

After that visit to Cottage we immediately told Dr. Brown at Children’s Hospital that we wanted his next MRI moved up, and so that's what we did......and on May 29, 2013 we were told to start planning for Sam’s end of life, that there was nothing more we could do.

To this day, I still cannot believe what happened.  After that appointment, Sam, Sabrina and I went to the Denny's down the street in Hollywood—just like always.  Sam ordered his mac-n-cheese and grapes and goldfish—just like always.  Sabrina and I ordered soup, and barely touched it.  As he sat there eating I watched him so intently—wondering exactly what the future held for him, and for us.  He was so cute, and innocent.  He had always been such a trooper and so trusting and did everything anyone ever asked him to do to make those tumors go away.  And we couldn’t figure it out.  We couldn’t help him.  No one could.

On the drive home I think it finally hit him.  He cried and lashed out:  "It just seems like everything's just impossible", he said.  And as he cried—one of the very, very few times he had done so throughout his entire nightmare of living with cancer—tears just streamed down my face as we drove down Ventura Highway.  I wanted to rip the steering wheel out of its column; I was so angry and so sad for him.  We had let him down.  And there was nothing we could do about it.

It was a day I will of course never forget.  And today, sitting here under his Happy Mother's Day picture that hangs on the bed still, I now know that when he drew that, he was very sick, and in less than six months he would be dead.  It's just incredible to me.   

I hope my wife can find some joy on this day.  She deserves it.  She’s still a momma—and a damn good one too.  We all love her and I know Sam’s looking down on her and just like last year saying: “I hope this day is like 50 birthday’s!!!  Happy Mother’s Day, Mom!  I love you!  Love, Sam”

Happy Mother's Day. I love you more than anything. I love you too. I hope this feels like 50 partys. I have a surprise.

Muffins with Mom, 2013

Mother-Son Dance 2013

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.