Monday, March 13, 2017

Not-Me

I haven't shaved my head in two years. I've forgotten how it feels...

I have an image of myself, a picture in my head.
And when I walk by a mirror, I'm a bit shocked. What's wrong with me? Who is that?

"Are you yourself again?"
I think that people look at me and they can forget. You can forget that I am not now and never will be the person that I was before Sam died.

For the most part, I am the person you know. The person who laughs and tells jokes and (even if my children disagree) is very, very funny. The person who bakes scads of hamantaschen and tells stories and plays Uno.

But it's always, always there. I am never ever going to be myself again.

I guess I'm a new me.

I realized that a lot has happened in two years. New people, new faces, new friends, new acquaintances. People who didn't really know the me that was me. The me that would never have dreamed of shaving her head. The me with four healthy kids, the me who didn't really know that it was so easy to go from me to not-me in just the blink of an eye.

Yael shaved too. And she's dealing with the in-between-ness of tween-ness. So she cried a little before school today, worried that someone would say something hurtful about her shorn head.

Before bed, we talked.
"How did it go?" I asked. "Not bad," she said. "We did talk about my hair a LOT."

"That's good," I told her. "It's one of the reasons we shave. Not just to raise money - even though that is important. But to get people to ask us about our funny hairdos. And we can tell them about raising money for St Baldrick's and about Sammy."

She wanted to shave. And she didn't want to shave. And now that she's done it, she's proud, she's good, she's really good. But she's sad. And so am I. Because right now neither one of us can hide behind the pretend-me-that-isn't-quite-me.

I'll never be (quite) myself again.

“The most painful state of being is remembering the future, 
particularly the one you'll never have.”
(Kierkegaard)

To donate to the St Baldrick's Foundation in honor of our shave, click here.

in 2015...Springtime
in 2014...Topsy-Turvy
in 2013...No worries here
in 2011...Snippets of Florida
in 2010...Purim is over
in 2009...Happy Hamantaschen
in 2008...Purim Fun

For one of us, this is a "before" picture
Oh yes, Solly decided to shave at the last minute too.
She's an old pro at this



Monday, February 27, 2017

Moving

Do they know that each time I hug them, I'm really giving two hugs?
Do thy know that each time I give in to a request, I'm really thinking of Sam? 
Do they know that when I decide what "matters," it's mostly based on one missing face?

Sometimes, I think that Solly is forgetting.

He was so little, so young. The new memories are crowding out the old ones. He's in kindergarten now, there's so much...new knowledge, new ideas, new experiences -- is this how we forget the younger years because our memories just fill up with so many new things that we just can't keep the tiny wispy baby memories ahead of them?

The other day, I started to realize that he might be forgetting. He barely talks about Sam any more, not the way he did right after he died.

And then just yesterday, he brought him up. Almost as though he realized it too, just as I did.
And then last night, when I was putting him to bed, he started to cry.

I miss Sammy. I want to see his face. When do we get to open the box in the cemetery? Do we ever get to open it up again? Do you think that there's a lot of plants growing there? Can we schedule a time to go there and see him? What does he look like now?

So we watched an old video of Sammy. We cried a little together.

Maybe you'll have a dream about him, I said.

Time keeps moving forward....without our Sam.




P.S. I'm shaving my head again: https://www.stbaldricks.org/participants/rabbiphyllis

Thursday, February 23, 2017

Alternate Reality

How's Sammy?

Oh....he's doing great.
He's eleven now, and he's in fifth grade. He's so tall! And so much hair...
You know....fifth graders....a lot of drama in that grade, huh?
He seems so good.
He just broke a thousand days post-transplant and things are going well.
Yeah, he gets tired easily and we're still really careful and nervous sometimes...
but he's off so many meds and it all just seems like it might be behind us.
It's never over, you know, but it's looking good.
He got into the school play. Both Sam and Yael are in the play - they're loving it...it's so fun to see them together...
He's playing the violin....
He's getting ready for middle school...
He's going to camp this summer...
You should hear the noise in my house when all four of them come home from school....It's beautiful.

It's an alternate reality that I sometimes run through in my head.
When I can't sleep. When it's quiet.
What would I be answering?

1,167 days have passed, and I feel as though time is slipping away, rushing away, flying away. We're moving further and further away from him. It is impossible to believe that he could just slide back into our lives if he just showed up. We are different now.

I've stopped believing that he's just going to show up one day, like in a movie about a missing child who is recovered twenty years after their abduction. Like we all just made a mistake one day and left him behind and then we found him again....I've stopped pretending he's just away for a while.

But I still sometimes can't sleep and I imagine what I would answer....how's Sammy?

I'm shaving my head again.
Because I feel just a little bit too normal.
A little bit too settled.
A little bit too far away from my missing boy.
My hair is long again, as long as it was when he died.
I find myself twisting a ponytail the same way I did for his funeral.
It's a little like re-opening a wound...but I'm not ready to just run my finger over an old shiny scar.
I'm shaving my head again because it just feels like time is slipping away.

I'm shaving my head to raise money to help other someday mamas to not feel this pain. 
Help me out: https://www.stbaldricks.org/participants/rabbiphyllis




Wednesday, December 14, 2016

It's a Wednesday

It's a Wednesday.

Like any other Wednesday.

Solly finished the leftover pancakes for breakfast.
Yael and David finished the leftover french toast.
I had a bowl of yogurt with granola.

There was coffee.

It's a Wednesday, so we got up and got dressed.
The high school has late start, so Michael drove the kids together.
It's cold outside, so I reminded everyone to wear a hat.

It's a Wednesday, so Solly argued about wearing socks.

It's a Wednesday, so Yael left me her Hebrew binder to bring along for later.

It's a Wednesday, so I drove to my office.

It's a Wednesday, and that's just how it is.

It's a Wednesday, and you're not here. 

Today is completely normal and completely abnormal, in much the way that every day since you died has been. Some days I am drawn into the darkness and other days I find the light. Some days, it's a lot of both.

It's a Wednesday, three years to the day since you died.

It's 1,096 days later and I miss you just as much.

Our beloved Dr. M is conducting his own campaign this week and it happens to be one that would be totally up Sammy's rock-loving alley. Yes, rocks. Check it out. My favorite part was the "press" conference. If you'd like a rock, click here. (If you'd rather give to St. Baldrick's, here's Yael's link.)


Rabbi Steven Lowenstein promised Sammy that we'd remember him with fireworks. This year, we watched them in a driving snowstorm and they were remarkably beautiful. 

Some of Sammy's friends watching the fireworks, lit up by their brightness (photo credit: Rebecca Einstein Schorr)

Wednesday, November 30, 2016

Things I Don't Do Anymore

Since you died, I don't sign all of our names.

I used to write: "The Sommer Family - Michael, Phyllis, David, Sam, Yael, and Solly"
Now, I just write The Sommer Family. I tried this week to write our names. It looked so bare. I had Solly add a turtle drawing. 

I miss writing all of our names. 

Since you died, I don't count heads any more.

I loved having six of us. I loved counting us, taking pictures of the four of you, I reveled in it, perhaps more than I should have.

We're always incomplete, so I don't count heads in the same way. It's always hard to set the table. There's a gut-punch every time. I know that it's practically useful to know how many people are sitting at the table. That doesn't make it any easier to count out the plates. 

Since you died, I rarely use the word "perfect" to describe an experience.

I fully understand the lesson of keeping something undone in your home to indicate that the world isn't finished, that it isn't perfect. Perfection has left the building...at the same moment that you left our physical world. That doesn't mean that things aren't wonderful, beautiful, special, and even amazing. Our lives are full of goodness and love. But as Leonard Cohen, of blessed memory, taught us so eloquently, there's a crack in everything. 

Since you died, I don't have a lot of patience for nonsense.

And by nonsense, I mean small worries about small things that might very well be big to others. I know that. And so I keep quiet about it. But I know that my very presence often brings others perspective. 

Since you died, I don't stop talking about you.

I know sometimes it makes people uncomfortable. And I've noticed that stories about your healthy days are easier for people to hear. A story that starts, "when Sam was in the hospital...." can make other people cringe. But I don't know how to stop. So I don't.

Since you died, you are always on my mind.

It's been 1081 days.


New Year's card in 2012
right before we left for Israel, 2013
this year's Thanksgiving

Thursday, September 1, 2016

Hard Days

Today's a hard day.

The first day of school has come and gone. Solly started kindergarten, by the way.
Today must be a hard day for you.

Sammy's bone marrow birthday has passed by.
I know it's a hard day.

It's the first of September, the beginning of Childhood Cancer Awareness Month.
The whole month is pretty hard.

It's a Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday...
Today is a hard day.

That's just it. They're all hard days.

Last night, Solly cried. "I miss Sammy," he wailed.
As we snuggled together in bed, he asked me, "how many pictures of Sammy do we have?"
"A lot," I said. "Hundreds." Never enough.
"I need one."

I'm learning, every day, new hard parts. Solly was so young when Sam died. Such a baby. Now he's a big kindergartener with new experiences and new ideas and new realizations. It's almost like he's re-learning how to experience grief as he gains a bigger understanding of the world. I didn't know that we would be starting anew each time.

Today is a hard day.
Tomorrow will be hard too.
Forever missing our boy....
First day of first grade for Sam, fifth for David
There should be THREE kids in this picture.
First day of school. There should be FOUR in this picture.
Where we were....
2015....Pouring
2012...Quiet Shabbat (chemo round 3)
2007...Out of the Shadow (David's first day of Kindergarten!)

You can still donate to St Baldricks in honor of Childhood Cancer Awareness Month. Let's end hard days for other families....

Thursday, June 2, 2016

More

Solly is a preschool graduate.

It's such a mini-milestone, really. It's not like we weren't planning on kindergarten.

And yet....it's really the last time that I have an "end of the thing" milestone that all four of my children have done.

There are still a couple of remaining firsts...first day of kindergarten...first tooth lost...I'm anticipating them with that weird feeling of anticipatory grief -- how will I feel knowing that eventually, there will be no more lists of four...no more neatly squared collages of photos of four little faces at the same point in their childhood development?

David finishes 8th grade this week. I will never ever have four 8th grade graduation pictures, four high school graduation pictures, four college, med school, law school, rabbinical school graduation pictures....There are so many milestones that will only be repeated three times in our house, not four.

Solly is fascinated by wishes lately. He grabs every fluffy dandelion he can get his hands on, and holds it near his mouth, closes his eyes, and hurriedly whispers, "I wish Sammy was alive," and then whoosh....I think he believes that he can make the wish come true with enough blowing on enough dandelions.

As kids, we are always wishing for more. As an adult, I have realized, of course, that more isn't always better. But in this case? I wish for more. More pictures, more milestones, more of everything. There's so much more that we could have had.

I wish for more.