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.

Sleep

People keep asking me if I am sleeping. I lie and tell them I am. Well, it's not really lying. I do sleep. Maybe not enough. 

Every night I lie in bed and read until I nod off. My book (or Sam's kindle, or iPad) will fall onto my chest, and startle me into the realization that I am no longer reading but I am, in fact, sleeping. So I set the book (or device) aside, and burrow down under the covers next to my husband, and wait. Pretty much every night without fail my brain springs back to life, and the broken record of Sam's last hours, minutes, and moments begins. 

I tell myself I don't have to do this. I tell myself it's ok not to think about Sam in order to sleep. It doesn't work.

I search for a memory of the day that's pleasant-like today's paddle board outing-and try to remember every detail, in order, in hopes of distracting myself to sleep. It doesn't work.

Emptying my mind does not help-that just leaves space for the memory of his labored breathing to take hold.

Filling my mind with thoughts of the glassy water of the bay and the seals like long-whiskered dogs in the water doesn't do the trick either. I can't stay focused long enough on any one thing to fall asleep. Within seconds the memory of his eyes opening for the first time in hours just before his last breath sneaks in.

Suddenly I am filled with guilt that in those last hours when his breathing was labored and no amount of morphine would smooth it out, why didn't I just pick him up and hold him? The evening before we had found the perfect position for his comfort, which was reclined against the arm of the couch, and it seemed that every time I moved him in the slightest-to give medicine or ease breathing-I just made things worse. Nothing worked. I guess that's my answer. I didn't pick him up because I was afraid I would make him uncomfortable. So I settled for sitting next to him and holding his hand and talking to him.

Nothing worked. And there is so much guilt associated with my inability to make his death peaceful.

Just as in the treatment of his cancer-Nothing worked. And even though it makes no sense, there is also so much guilt around our inability to save him.

So, to answer the question about sleeping honestly, "Not very well." Nothing works.

How to help the newly bereaved

The death of Superman Sam has had me thinking. Although my own Sam has only been gone 56 days, or maybe because he's only been gone 56 days, I feel like I can offer some advice to those that love and want to support the Sommer family.

I don't have advice on what to say. I haven't figured that out yet. I do know that it does not help to talk about G-d's plan, heaven, angels, being in a better place, etc. There is nothing you can say that will make them feel better. There is nothing you can say that will make them feel better. Just be with them. Hold hands. Tell them you love them. Say his name.

Here you go-thoughts on paper (or a screen. Whatever):

Do not ask, "Is there anything I can do?" "Is there anything you need?" The bereaved parent will likely answer, "No." Unless you can bring the dead back to life or build a time machine, these open-ended questions are not helpful.

Just offer to do something. Guess at what they might need and offer to do it. Don't say, "Can I...?" Or "When would be a good time for me to...?" A better approach would be to say, " I would like to...(insert helpful thing here). Is...(insert day/time here)a good time?" 

Here's a list of things every family might need at one time or another, depending on where they live or the time of year:

Laundry

Shovel snow 

Mow lawn

Clean bathroom

Feed and care for pets

Drive kids to activities

Buy groceries

Vacuum

Take out trash
Return library books

So you might say, "Phyllis, I would like to come over and do your laundry. Is tomorrow at 10am a good time?" Now she might say, "No thanks," because maybe her mom is there and handling that aspect of running the house. At this point I would suggest that you either offer to do something else right away or that you let her know that you'll check in with her in a few days to make the same offer. 

Here's another way to approach helping-When Sam was on hospice (almost 5 months), I had a few friends who with regularity would text me when they were out shopping. "Hi! I'm at Costco (Trader Joe's, Whole Foods, Albertson's). Do you need anything?" This is a great way to offer help. I would be reluctant to hand someone my whole list, but if we're out of toilet paper or bread or eggs, I can accept this small gesture.

Offer to visit when visitors might be thinning, like after Shiva. Don't say, "Call me when you're ready for a visit." You call or text and offer. And if they say no, call next week, and the week after, and the week after. And if you call and they don't answer, leave a message. I could not talk to people in the early days, but I did listen to messages. Texting is easier.

If you are far away and can't be there to help, donate to their St. Baldrick's campaign, or the MACC Fund. Send a card, especially after a few weeks when they stop coming. Use his name-"Sam had the best laugh." It will be appreciated. I promise.

You know Michael and Phyllis, and so I'm betting you know what they need. Trust your gut.

Small plans and lowered expectations

I've been sitting in this spot on the couch since 7am. It's almost 10:30am. It's Sunday, so if you're lucky enough to have a day off and have no plans, which occasionally happens to most of us, you could get away with this. This doing nothing.

Thing is, I did the same thing yesterday. Yesterday I folded half of the clothes in a laundry basket that's been sitting here since Friday night. I'm still in pjs. I haven't brushed my teeth. I do have plans. They're not big. I keep them small on purpose-being gentle with myself: Finish folding the laundry, get dressed (no shower), brush my teeth, read a book, go for a walk, do some yoga, bake granola bars (a pre-cancer Sunday ritual I'm trying to bring back), cook dinner (what's the point, without my Sam?).

I've become fairly comfortable with these small, daily goals. I feel downright accomplished when I complete the small tasks I set out for myself. It's a good day if everyone has food to eat, clothes to wear and teens get to school and get back home again.

On Friday I learned that the committee at my place of employment denied my request for another month of catastrophic leave. Back in July or August my advocates with HR and the school board felt there would be no problem with me sitting out this entire school year on catastrophic leave. Sam's terminal illness and death are a catastrophe. He is dead and I have lost my bearings and my remaining children and my husband are also spinning, helplessly. It seemed reasonable that I take this year to try and piece us back together in some semblance of family-this new, fractured unit of four. 

Officially my leave ended on Tuesday. So in the vision of this committee I should've gone to work this week. Right now, if I were working tomorrow, I would be in my classroom prepping for the week. Instead I am on the couch. According to the committee I am ready to take responsibility for the education of 30 young people. Per the committee I am ready to drop the teens at school, manage a classroom of 30 Sam's for 6 hours, work until 5 or 6 planning the next day, and come home to what? Last week one of the teens cried every day after school over the stress of grieving, keeping up, and catching up. Last week one of the teens left the house in a fit of grieving anger and I drove around the neighborhood looking for that one to offer comfort and a ride home. When I think about returning to work I mostly think of the cost to the teens and John. I haven't even begun to think about how I am yet. How will I be around children Sam's age? Will I be constantly distracted with thoughts like-"He should be here."? Will I be irritable? Cranky? Unfocused? I can't concentrate long enough to read a book or fold a load of laundry. What kind of teacher will I be?

I think I'd be a pretty crappy teacher if I went back to work right now. I think I wouldn't want my kid in my class. HR is on my side. So is the board. They want to offer me administrative leave. It's the best they can do. It means I have to prove my unfitness for work right now (prove that 56 days after Sam's death I am still grieving too hard to work?) It also means that the sub in my room will be paid out of my salary. These are rather large inconveniences that I (and my family) are prepared to accept if they allow me to stay home to continue this imperfect reassembling of my family.

And just in case anyone is still actually with me and reading, sweet Superman Sam died yesterday. He was 8. Here's a link to his mom's blog. http://supermansamuel.blogspot.com/2013/12/what-im-missing.html?m=1