Footprints in the Snow

I officiated my first funeral yesterday for a dear friend who died suddenly on Monday. It was my first time as a rabbi, and not as a parent, returning to the cemetary where Sammy is buried. I was comforted to see that my friend was being interred only a 1000 feet east of where Sammy is buried. I thought to myself, "At least my friend has Sammy as a neighbor."

I held myself together and calmly read the liturgy and the mourner's kaddish. I held my walls as firmly in place as I could, only wavering at two points during the mourner's kaddish. I gave the family hugs and watched them leave, slowly one by one, after the burial. Then I drove west, looking to see if I could find Sammy's grave on my own. It took a moment and one turn around (there was a lot of snow covering up the landmarks I know to look for). I followed the footsteps in the snow of those who had come to see their loved ones before me. I stood at Sammy's grave and cried my eyes out wanting to scream at the world.

Sammy was my rock. I was Sammy's person. So many times when I had to leave to go to work he would so "No Daddy, don't go." And I hated leaving him even if I needed the time away. I always came back to him and he always came back to me no matter what, even if we had an awful day together not getting along. At the end of each day we always forgave each other and found our way to lying next to each other just before bedtime, side by side in the dark. Sammy always asked me a thousand questions. He was always curious about this and that. He always wanted to know more. I hope he has all his answers now. He would love that.

These days I feel like I only have one question, "Why?"

Ninety

Sam at 90 days old:

Sam, 90 days before he died:

A song came through my playlist today. It's a beautiful and sad song: Clouds by Zach Sobiech. Zach wrote it shortly before he died of pediatric cancer in May of 2013. When he died, I cried, just like I do whenever I hear of another child taken by the plague of cancer. But I digress.

The song came on today in the car, and Solly was with me. I don't think he's ever heard the song before. As it began and a few bars played, he said,

"This song has me and Sammy in it."

How did he know?!

Sammy is always on his mind.
Sammy is always on my mind.
He's on everyone's mind in our family.
With every moment, with every song, he's on our minds.

Ninety days have passed.
A blink.
And an eternity.

Topsy-Turvy

It's almost Purim.
Purim is a topsy-turvy holiday -- we're supposed to be silly. Things are supposed to be upside-down.
And it's supposed to be fun.

We make hamantaschen...every year.

My heart's not in it. Our first real holiday without Sammy.

But I am going through the motions.
I've ordered Purim costumes.
I've made hamantaschen.
Because the kids demanded it.
How could I say no?

Fake it til you make it, right?

It all feels so topsy-turvy.

Sammy LOVED Purim. He loved making hamantaschen. He loved dressing up in costumes. He loved the carnival.

It all feels more topsy-turvy than ever.

Last year...

Making hamantaschen last year

2012 - an angry pig from Angry Birds

Purim 2010, a dragon costume (Solly's about to grow into this one)

From 2011 -- he couldn't decide what to be so he dug through all the costumes and picked this one. I think it is Boba Fett?

2010, delivering mishloach manot (food gifts)

2009 - horsehead + pajamas (Yael is a fairy)

2009 - eating hamantaschen

2009 - making hamantaschen!

2008 - a little bumblebee

Blurry

I went to a yoga class the other day.
And everything just felt....wrong.

I was feeling cranky beforehand.
I was feeling unbalanced.

And then nothing went quite right.
I forgot my headband.
I forgot my water bottle.
I even forgot my mat!

My muscles felt stiff and tight.
Tears flowed.
My shoulder ached.
I was achy and cranky and sweaty and grumpy and crabby and....

I tried. I really did. I closed my eyes. I breathed slowly and deeply. I sank a little deeper into each pose. I just couldn't get it to feel right. I couldn't get my footing set. I couldn't quiet my mind.

A balance pose...one side and I finally felt it....a little sense of calm started to find its way in.
And then, bam. The second side and I couldn't make it work again. That sense of calm was lost. By the time we settled into savasana, the final resting pose, I was restless and frustrated. I couldn't wait to get out of there. 

Some days are just like that. 

I'm feeling off-kilter. It's totally reasonable, obviously.
I'm feeling a little bit blurry.
I'm busy and yet nothing seems to get done.
Sometimes not even yoga can help me out of it.
Sometimes the time slips away...wasn't I just doing something else? 
I still flit from thought to thought...sometimes I can put a few coherent ideas together.
Sometimes things seem fuzzy.

And then I fold laundry, read "Goodnight Construction Site," listen to Bar Mitzvah students and make smoothies and cheese toasts. Good days....bad days....push through the vinyasa....

Sometimes it's just the tears that make things blurry...

12/09 Even the blurry outtake pictures....I'm so glad I kept them.

7/25/12 There was a clearer shot taken after this one...

Frozen in Winter

It's been quite a winter, hasn't it?
I know that people will be talking about the winter of 2013-2014 for a long time to come.

Whenever someone tells me that this is "the worst winter ever," I usually just nod and agree.

Worst winter ever.

I feel like the weather is mirroring our own family's experience.
Worst winter ever.

I'm sure you've also seen the Disney movie Frozen. It is a big favorite in our house. Everyone loves the soundtrack and some of us even went to see the sing-a-long version. Solly and Yael (even David) walk around humming or singing the songs....all the time. Okay, me too.

It was also the last movie that Sammy saw in the theaters. We saw it in Orlando during his Make-A-Wish week. (I do tell myself that he would be completely annoyed with Yael and Solly's constant warbling and in true obstinate-Sammy-fashion, tell us he hates the movie now. Or maybe he would be singing right along...)

There are a few parts of this movie that bring me to tears each time. Anna sings that now-iconic song to Elsa: "do you want to build a snowman?" because Anna can't understand why Elsa is cutting herself off from her beloved little sister. I weep when I hear this. Like Anna, Solly can't understand where Sammy is. Yael and David miss his presence. The beauty of this sibling story is so deeply poignant for me. I never fail to be brought to tears by this bit of the movie and this song. I hear Elsa's voice: "go away, Anna!" and I hear Sam saying "go away" when he was feeling particularly sick or uncomfortable. Oh...

And then there's this: this image below is, to me, one of the most powerful pictures of grief:

Elsa is desperately mourning her dead parents. She is locked in a place of deep loneliness and loss, of sadness and heartbreak. Her room fills up with the cold and snow and ice....and she is at its epicenter. Oh, I know how she feels. The cold threatens to overtake, the sadness overwhelms. Eternal winter beckons, and it's so easy to stay there, to let it overcome and fill up all the empty spaces.

Sometimes I feel just like her. Sitting huddled against a wall, the swirling darkness all around.

But I am not alone.
And that makes all the difference.
It really and truly does...
Elsa and Anna reconcile. They come together in beautiful sibling harmony.
I cry then too. Because our ending just isn't the same.
Oh, how I wish it could all have been tied up in a neat happily-ever-after-ribbon.

So I have to say again: worst winter ever.

February, 2011

February, 2010

December, 2009

January, 2009

Telling Stories

I have a lot of "jobs" as a parent.
One of those jobs is is to tell our family's stories, to shape our family history.
In our house, one way we do this is through the photo books that I've been making for about 12 years. The photo book shelf has now expanded to two shelves, and there are almost 35 books chronicling our family's life...in (mostly) chronological order.

My children love these books. They love to look through them and remember things, they love to tell the stories of "when that happened" and "when I was little" and they love to look at their own adorable faces and the faces of our friends and family. (Solly doesn't yet understand why he isn't in the books that came before he did!) I've learned over the years to include as many pictures as possible -- even the "bad" ones, because even those help to tell the stories. There are minimal words in these books, usually just a few reminders of the event or a sentence or two explaining who the visitors are, what's happening, or why these pictures are important.

September, 2009 -- reading the photo albums

I am usually about six months behind in creating the books. 
Until this week, the last book on the shelf ended with June of 2013. Things were a bit uncertain in June. Sammy wasn't in remission. Our doctors were seeking out new treatments that would get him to transplant. I was scared. I kept taking pictures but I wasn't quite ready to make them into a book.

Last week, I finished the summer story. It was oh-so-hard. I knew that I couldn't stop telling our family history. I know that I have to keep going, somehow, to remember the good moments and the bad ones and keep our family moving...forward.  

The new book arrived this week. Like all of these books, it is so beautiful:

It was thoroughly examined.

In spite of the dread and worry that hung over us all summer long, it is such a happy book. There are so many smiling pictures of all my children, there were so many good things that happened all summer long. I really expected to cry as I paged through it. But I didn't. I smiled. The memories of those days are good ones, even though I also included pictures of Sammy at the hospital. The reality was that while we were focused on his treatments, he was focused on visiting the zoo, going to camp, making art and doing yoga, and fishing. His reality, and the reality of all the kids, was not about cancer. It was about doing summer-time stuff, about making the most and the best of every day, it was about living.

And so we keep telling the stories.
We keep remembering.
We keep on going.

(It doesn't make the next book any easier to create, however.)

Hair Today

Saturday began the last month in which I will have a full head of hair.
You read that right.
On April 1, I will be shaving my head.
I've alluded to it before, I've talked around it.
But it's almost here. And I think it's time to share my thoughts.

Hair has always been an important part of our family. My chidren have strong opinions about their own hair, and how it should look. 

Sammy's first haircut 

After the lice-shaving incident, everyone was reluctant to get a haircut. This is Sammy's shaggy look.

For Sam, losing his hair was a big deal at first. I think it was more the idea of the change, rather than the actual hair loss. It changed how he looked, and it changed how people looked at him. Throughout his treatment, he was mostly bald, and then as it grew back after treatment, we noticed and celebrated.

And throughout all of last summer, his hair grew back after some of the heavy rounds of chemo, during the outpatient portion of his treatment. He actually had quite a bit of hair on his head when we headed into transplant (bottom right hand pic) and I think that helped him to feel more "normal" through the summer.

He shaved his own head for transplant, and it was quite an....art piece.

At the very beginning of this terrible journey, someone suggested that I shave my head to raise money. Sam was totally opposed to it. I know that everything in his life seemed so topsy-turvy, having my head look completely different would be one more terribly weird change. So I dropped the idea, but I marveled at the photos of the 46 Mommas who Shave For the Brave...and I thought that maybe someday...maybe.

When Sammy was in the hospital back in October, I was feeling helpless and frustrated. I made t-shirts (and raised about $5000!), but that just didn't seem big enough. I posted a little idea to Facebook "maybe the time has come to shave my head." It seemed like it would be a BIG statement.

It's come to be something so much bigger. With Sammy's death, it has given me a purpose and focus to my desire to give this all meaning. I don't want to hear that any of this terrible stuff happened for a reason, I really don't. And I do believe that I have a responsibility to make something happen because of it. (Which is far from the same thing.)

There are so many ways to help kids with cancer. There are so many ways to help their families and their caregivers. We have been the recipients of so much generosity throughout our whole experience. The patient and family support organizations are amazing, and made so many days so much brighter in the midst of so much gloom. I know that we will continue to support these organizations and their missions, and we want to make the world brighter for these families.

But if I'm being totally honest here, I know that there's only one thing that I can do to have real, lasting impact, and that's to raise money for research. The only way we are going to end this terror once and for all is with the research that will create better treatments, more effective protocols, and better long-term prospects for all survivors. By funding research, I know that I am putting my heart and soul into my own private goal of a day when no other parent will hear what we heard: "there's no more that we can do for your child."

And so I am shaving my head and raising money, along with a whole bunch of my friends and colleagues (including Michael...we will be the #baldestparentsontheblock), the 36 Rabbis Shave For the Brave.  (My feelings on how so many of our colleagues and friends have stepped up to join our cause will fill a whole other blog post...I am moved beyond words at this point.)

Sammy and his buddy Braeden (who now has awesome hair!), little bald heads learning together

When I walk around out in the world right now I'm feeling a little invisible. Not that people don't see me, trust me, they do. But on the outside, I look pretty much...the same. Much like Sammy as his hair grew in while he was still in treatment, I don't look like someone who is changed. Shaving my head, which will be 109 days after Sam's death, 658 days after I became a "cancer mom," will give me a whole new look. My grief will not be invisible.

And my visible grief will be so much bigger than just about me and so much bigger than just about Sammy. As of this writing, we've raised almost $360,000. To put it in perspective, a St. Baldricks' Scholar receives a three-year minimum grant at $110,000/year - our fundraising so far has almost fully funded a three-year St Baldricks' Scholar! Imagine the brain power and how much that can change the future, the face of childhood cancer. Every time someone asks about my head, about my hair, I will tell them about the research that my simple act of shaving was able to fund.

It's for Sam, yes. 

But this is NOT just about my Sammy. It's about every kid, about every family.

It's also for Cara and Ari and Jonah and Clio and Emma and Cookie and Renae and Sean and Isaac and Leah and Collin and Mia and Zachary and Emily and Jackson and Caleb and Nolan and Eric and Katherine and Braeden and Chloe and Pinky and Issy and Aidan and Hannah and Maddie and Erin and Dawson and Samantha and Browyn and Max and Eli (and Ezra, Jonah, Jake, Idan, Samantha, Connor, Rand and so many others who don't have cancer but whose treatments are so close to the same and who have benefited from the same research)....and those who, like Sam, are no longer with us physically...Bo and Ian and Jack and Kayleen and Donna and Talia and Tucker and Addison and Mya and Zach and Sophia and Sammy and Gabriella and Zach and Londyn and Caleb....

And so many more. So many that I can't even type all the names....

So here we go. Let's fund life-saving research.
One more month and I will be bravely bald. 
Will you support me along the way? 
The link to donate to my goal is here. No amount is too small to help fund the research that will save future kids from the hell that Sammy and our family have endured.