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.

Friday, March 25, 2016

Stretching

I read obituaries.
Nearly every day, I scan through the obituaries.
Mostly, it's a professional thing. I tend to jump to the ones with the Star of David on them, checking my little community.

Sometimes things catch my eye.

Today, there was an obituary for an older person, asking for donations to be made to the Ronald McDonald House charities. That's not exceptionally common, so I kept reading. The other option for donations was a named foundation. My sense of morbid curiosity got to me, and I googled the name.

Based on what I can tell from the obituary, 38 years ago this person's niece died of leukemia. She was not yet 3 years old. And 38 years later, it still had impact on the family's handling of this person's death.

Thirty-eight years later.

It stretches so far into the future....it's almost my entire lifetime.

One of the reasons I haven't been writing lately is that I am actually paralyzed by the immensity, the weight, the magnitude....of that lifetime. I wonder, sometimes, how that can actually be real.

Our lives are fairly normal. Normal stuff happens. School, laundry, movies, new shoes....whatever makes us ordinary travelers in this world. The living kids are great. "Well-adjusted." Happy.

Sammy's life doesn't hang over us like a cloud. It really doesn't. His presence is everywhere, we talk about him all the time, but it's not in a Big Deep Dark Way. We live with him.

And yet....there's that lifetime. Stretching before me. Without him.

In 2015....Older
In 2014...It's Been 103 Days
In 2013....Buzz Cuts for Cancer (video....and omg)

just days before diagnosis at his Kindergarten graduation ceremony

Saturday, January 2, 2016

Another New Year

Here we are. Another new year.

I couldn't help but spend the last week remembering the new year that ended 2012 and began 2013. Sam was in remission. We spent the day hanging out with friends, going to a soccer game, and I remember a rousing game of Scrabble as we drew towards midnight.

Sam was in remission.
The world felt full of possibilities.

If I had known it was the last New Year's Eve that I would spend with him....what would I have done differently? Sammy died having never tasted champagne. He died without staying up late and watching the ball drop in Times Square. Sam died without seeing the new year 2014. That was his last new year...he never again saw a January 1.

And yet, we turn over the calendar. We start 2016, another year without Sam. I remember writing, as 2014 began, a request for the year to be gentle. I remember that last year, January 1, 2015, was Sam's Hebrew yahrzeit. But January 1, 2016? It just feels a little like we're just moving farther and farther away from our Sam. From that time when he was with us. From the way it felt to hold his hand and kiss his head. I have to concentrate oh-so-hard to conjure up those feelings.

I am one of those people who seldom recalls her dreams. It's rare that I wake up with a complete picture of a dream. But the other night, I dreamed that Sam was in the hospital. The hospital had changed, and things were different there. Yet I knew it was the same hospital, some parts were so clearly recognizable.

And I couldn't find Sam.

I knew he was there, I was looking for him, searching all over, I couldn't find him.

I woke up feeling heartbroken and lost and sad.

Sam wasn't in 2015. And he won't be in 2016.

The world keeps spinning and we keep putting one foot in front of the other. And there is joy and blessing and happiness in a lot of what we do. (And there is the ordinary, oh-so-ordinary, the regular, the mundane, the useful, the practical, and even the annoying in what we do as well. This is real life, and I know it.)

But we know he isn't there. And the hurt never goes away.

It's a new year: I do believe that you can still donate using this link. It's a new year and there are new goals. I'm honored to say that the St Baldrick's Foundation raised a little over $36 million in 2015 to help fund research to help more families avoid blogs like this one. Thank you for all that you did to help with that (great Jewish) number. Let's keep it up together, friends.

December 31, 2012

December 31, 2012