Tuesday, September 16, 2014

Mirror of Erised

Yael and I are reading the first Harry Potter book.
It's my fourth time reading it.
To myself, to David, to Sam, and now to her.

I can't even begin to imagine how it's going to feel when she finishes the series, something that Sam did not get to do.

Tonight we read about the Mirror of Erised.

As Professor Dumbledore explains, it is a mirror that does not show one's reflection. Instead, "it shows us nothing more or less than the deepest, most desperate desire of our hearts."

Harry sees his parents, who died when he was a baby.

Yael doesn't understand the whole of it. I asked her what the mirror shows. "Dead people?" she says. Well, I try to say, it shows us what we really want the most in the world.

"What do you think the mirror would show us?" I ask her.

"Sammy."

Yeah, I say. Sammy. 


But Professor Dumbledore continues his explanation: "However, this mirror will give us neither knowledge or truth. Men have wasted away before it, entranced by what they have seen, or been driven mad, not knowing if what it shows is real or even possible...

...It does not do to dwell on dreams and forget to live, remember that."

 And so we just keep reading....

Sunday, September 14, 2014

9 months

I loved being pregnant. Nine wonderful months of growing another human inside me.

I don't remember a lot about being pregnant with Sam. I don't even know if there are any pictures of me pregnant with him! 

I think this is the only one....
We scheduled David's birthday party for a little over a week before the due date (and a little before his birthday). A Sunday afternoon. Everything went great (four little kids for a superhero party -- how prescient was that?) and that night, I remember, I finished up a photo book on shutterfly and knew that the next book would start with this baby's birth. I went to work on Monday and somehow I knew, because I left my desk spotless at the end of the day.

David's 4th birthday party, November 6, 2005
About 1am (Tuesday morning), my water broke. We called Ellie and she came over to stay with David. I took a shower and ate a sandwich while we waited for her. I remember folding laundry while sitting on a towel at the kitchen table. I remember feeling contractions and laughing at how silly I was being...folding laundry.

Things went smoothly at his birth, a little moment where they took him away to check his lungs. But all was well. David was thrilled to be a big brother. We had two boys. (His Brit Milah was held 8 days later, on David's 4th birthday.)


David meets Sam
Nine months of baking, nine months of growing, nine months of anticipation, nine months of gestating this little boy who came out absolutely perfect. Samuel Asher. 

Nine months is how long he's been gone today. Nine months. 

It took nine months to grow him inside my body. I can't believe he's been gone that long....I would give anything for even just nine more seconds....

Sam at nine months old....

A year ago today was Yom Kippur....
And two years ago today was Rosh HaShanah....

Thursday, September 11, 2014

Imagine

It could have gone differently.

Imagine a life for Sammy in which he was restricted, constantly, from everything.
Imagine telling him, day after day, no, Sam. No, you can't do that.
Imagine his brittle body causing him pain each day.
Imagine him waking up one day to have the doctors tell him, you have a new kind of cancer, caused by the treatment that saved your life, and he says, I wish you had never saved my life.
Imagine the depression, the anger, the constant emotional pain.
Imagine opening those wounds again and again.
Imagine never leaving Cancerland EVER.
Imagine his unhappiness, every day, his anger and his frustration, his distrust of everyone, his belief in the goodness of the world shattered by his daily discomfort.
Imagine the despair overtaking him, filling his life, and leading him down a path of self-destruction.

Imagine his siblings, living in the betwixt and between with him, always skipping parties and playdates, worried that something would happen to their brother if they picked up a germ.
Imagine their lives in constant limbo, wondering who will pick them up and who will put them to bed and who will feed them dinner and where will Sam fit in.
Imagine the uncertainty, the unknowing, the worry, the wonder, the pain.
Imagine the feeling of being shuttled aside, Sammy always at the forefront of our concern.

Imagine the different nightmare our lives could have been.

Would I trade this way for that one?
Who can ever answer these questions?
Who can ever know?

I just know how very very very much I miss him.


A year ago today, Dr M stepped into the Nerf-Battle fray...
Two years ago today Sam had a central line repair....oh, the things you remember.

Tuesday, September 9, 2014

Cashews

I had a few minutes to wander through the store, restocking the pantry as the school year starts.

I lingered near the snacks, contemplating what I should buy for those after-school snacks that seem to be consumed at an alarmingly fast rate.

Cashews?
Who likes cashews? I thought to myself.
Someone likes those. I should buy some.
(I have a lot of kids. Keeping track of their eating habits is hard!)

Wait....I think it is Sammy.

I didn't buy them.
Maybe I should have.

We've got a busy household.
And yet his presence is always there.

P.S. When I got home, I asked Yael if she likes cashews. "Yes, just like Sammy does," she said. I guess I should have bought them anyway.





Wednesday, September 3, 2014

Honesty

A year ago today I had a conversation that still makes me a little sick to think about.

It was the day before Day +8, which was also Erev Rosh HaShanah.
I had a plan, I knew that we wanted to have an opportunity to bring all the kids together, celebrate the holiday in a small way, and give Sam his new Hebrew name.

I had a plan, but I wasn't sure it was the right one.

Sam was 8 days post-transplant. His immune system was incredibly compromised.
Solly had just begun a new preschool. Germs....everywhere. (no matter how much hand sanitizer we used!)

I remember that I didn't even know how to ask the questions.
But I remember pulling Dr. M into the anteroom of Sam's room. A resident tagged along.

I posed the question: Tomorrow is Rosh HaShanah, I said, and it's Day 8. I really want to know if I can bring Solly over here. Sam hasn't seen him in over a week, and I just think it is important to have them all together. But if you think this is a bad idea, I will get over it.

Dr. M cleared his throat, and I could tell he was going to say something that I knew already. "He has a bad leukemia," he said. "That's the biggest threat to his life."

I always appreciated his honesty with me. He knew that I knew what was going on here, perhaps not to the great extent of his experience, but in my own experience, in my sense of what was going on out in the hallways of the HOT unit....I knew. I knew other children with the same story...AML...relapse...BMT...and then the terrible ending that we faced. I knew their names, their stories, their heartbreak. And Dr. M knew that I knew. So he was honest with me and I needed that honesty. I needed one space where I didn't have to sugarcoat or pretend for anyone. We were having this conversation in the anteroom because the very last person who should hear this honesty was Sammy. 

I remember taking a very big deep breath.

"Are you saying that I may never have all of my children together again on a Rosh HaShanah? That this could be our last one together?" The words came out all in a rush, almost defiantly.

I couldn't even believe that those words came out of my mouth. But I was terribly afraid, I was sick with fear. I knew the odds, I knew the statistics. I didn't want to talk about it -- not with my family or my friends, there was no one else with whom I could say this terrible sentence. I think my bluntness startled the resident. I think it may have startled Dr. M too. I've never asked him.

"Yes," he said. "That's what I'm saying."

Fine. Decision made. Solly will come. We all will be there. Together.

Rosh haShanah, the new year. Not celebrated with toasts and late night kisses, but with prayer and supplication. I couldn't read the words...I couldn't even imagine the words. So instead I dipped apples into honey and kissed my sweet children.

A year ago today I had that conversation, and I still get a little sick to my stomach when I think about that moment.

Every time someone sent Sam a note that said "you can beat this!" or "you're so strong!" I would feel a little clench in my belly, a little twist in my heart.

Because I didn't tell anyone, but I wasn't so sure it was all going to work out.

So I brought Solly on Erev Rosh HaShanah.
I imagined that every day was his last.
Just in case.
Today, I'm glad I did that.

First Rosh HaShanah - 2006
The Famous Lice Rosh HaShanah - 2008
Rosh HaShanah 2010
Rosh HaShanah 2011

Solly makes almost this exact face now.
All together, Rosh HaShanah 2013...forever the Sommer Four.

Monday, September 1, 2014

Childhood Cancer Action Month


If you're reading this blog, you're already "aware" of childhood cancer.

You're aware of the way that it can tear families to bits. You're aware of the crazy drugs and the crazier side effects. You're aware of the roller coaster that cancer treatment is for any family. You're aware of the horrible horrible moment when the doctors tell you that there is no more that they can do for your child.

You're also aware of the way that communities can come together. You're aware of the way that love and hope and blessing can shine through the darkness. You're aware of the pain that we've felt and you're aware that even just your virtual presence can mean so much to a family like ours.

You're probably also aware of some of the statistics:

1 in 5 children diagnosed with childhood cancers will die
46 children are diagnosed with cancer every day
7 children die every day of childhood cancer
Only 4% of all federal cancer research funding goes specifically to childhood cancers.
Every 3 minutes worldwide, a child is diagnosed with cancer.

Awareness is important.
Awareness leads to funding. Funding leads to better treatments, better diagnostics, better drugs, and eventually, better statistics. Cures, even.

So why is this post titled "childhood cancer ACTION month"?

I am hoping that YOU, my dear readers, will take your awareness and move it into ACTION this September.

Here are five suggestions of ways that you can TAKE ACTION this month:

1. Go Gold -- change your Facebook or Twitter profile picture, wear gold nail polish, put a gold sticker on your car....do something GOLD. When someone asks you why you've "gone gold," tell them.

Feel free to borrow this graphic as your profile picture or make your own
2. Commit yourself to sharing your new knowledge about childhood cancer with at least one new person this month, one person that you haven't told, one person who doesn't know Sammy's story. Or any child's story. To read more childhood cancer stories, follow Mary Tyler Mom at her blog, where all month long she will be sharing these heartbreaking stories.

3. Advocate on a political level for childhood cancer research funding. Start here at the St Baldricks Foundation. 

4. Organize an event at your workplace (blue jeans Friday?), your school (pajama day?), your neighborhood (lemonade stand?), your synagogue or church (bake sale?)...and commit to raising money AND awareness.

5. Make a donation to the St Baldricks Foundation, an organization committed to funding pediatric cancer research.

I miss my child so desperately.
Each day I find another thing that I will never learn about him.
Would he have been taller than me?
When would his voice have changed?
What would that deeper voice sound like?
Would he still love turtles? What would his new interests be?

I miss him so much, and I can't ever wish this on anyone else.
We can't bring him back, no matter how much we wish that were true. (Or how many times Solly asks.)
But hopefully, hopefully, hopefully....we can be a part of a future for other families, families that won't have to hear the horrible words that we heard.

Your child has cancer.
There's nothing more that we can do.

September...it's not enough, but it's a start.



Wednesday, August 27, 2014

Marking

This week marks Sammy's second birthday, his bone-marrow-birthday.


He was really proud of the idea of having two special birthdays.

I had imagined a big celebration for this week, heading into his first bone-marrow-birthday. A big bash. A pool party? A carnival? A bone marrow drive? A fundraiser? Sam and I had even discussed the options, the ideas. He was beyond excited for two birthday parties!

Instead of a bone marrow birthday celebration (and don't worry, someday we might actually have that fundraiser carnival on his birthday), we had a different experience.

We dedicated Sammy's gravestone.*

It was a small, family affair.
There were many many tears.
And a few giggles, mostly related to the questions that Solly asked ("Are we going to dig Sammy up, mommy?") or the funny stories that we all told about him (Yael loves to laugh about their card games together).
Did I mention that we cried?

We left pretty rocks that we rescued from the beach and painted. Our sweet young friends-like-family painted turtles.

Do you like the turtle?
Of course, there were googly eyes.
This little circle opens up to reveal a beautiful photo of our Sammy. Solly loved opening and closing it.
It's all very real. It never fails to be real.
But that headstone, so very real.
So very final.

It's not at all how I imagined spending this week. And yet, it was the right thing to do. It was right to take the kids to the cemetery, it was the right time to make this mark on the world for Sam.

That doesn't make it any easier.
Just....missing him.

Today is 256 days that he's been gone, and exactly 365 days since bone marrow transplant. 
Where we were:
One year ago today: a bone marrow birthday
Two years ago today: a short hospital stay

*Jewish tradition has a lot of customs surrounding death and mourning. The custom of setting up a stone or a monument, dates back to the Torah, in which Jacob erected a monument to his beloved Rachel after her death. Obviously, the marker helps to identify the grave and to honor the dead.