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.