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

Monday, December 14, 2015

Still Here After 730 Days

I'm not over it.
I'm not through it.
It hasn't gotten any better.
It hasn't gotten any easier.

I'm not used to it.

You think you can "get used to anything."

After all, the hospital became our "new normal."

But this? Not used to it.

There is always always always something missing.

I've gotten better at working around it.
I carefully skirt the conversations.
I've practiced smiling.
I open my mouth and the words come out, the words I've so carefully put together.
It's not an act, exactly. I'm not pretending or faking in a conscious way.
I'm just....working around it.

But it's always always always there.

Sam.

The missing piece, the missing link, the missing....

Would he be taller? Would his teeth need braces? What size shoes would I be buying for him right now? How many chapters would he negotiate to read each night? How late would he want to stay up? Would he be very excited about the new Star Wars movie? Would he be trying out for the school play?

730 days later and we're just left here to wonder. We're still here. And he's not.

I can still feel his body in my arms. If I close my eyes and breathe very carefully, I remember what it was like to kiss his head. I can hear his voice, his laugh....

Oh, Sammy. We miss you so much.

Three is not the same as four.
Three plus a turtle (on Solly's shirt) 
Last night, fireworks lit up the sky in Sammy's honor, thanks to Rabbi Steve, who made a promise to Sam. It was pouring rain....the whole world was crying with us. 
On the 8th night of Chanukah, we also lit this Yahrzeit candle. 

Monday, November 23, 2015

Thankful

I am thankful for the gift of family. To hold these people who know me so well and to know that their hugs hold generations of love...for this I am grateful. 

I am thankful for the gift of friends. To find kindred spirits amongst all the multitudes out there and to know that they understand me, love me, and choose my friendship too....for this I am grateful. 

I am thankful for the gift of memory. To be able to hold onto those fragments and wisps and to piece them together into the stories that are our lives....for this I am grateful. 

I am thankful for so much even as I am missing so much. I can't be ungrateful even in the face of an empty chair -- how dare I? 
A big group of us serving dinner at the Ronald McDonald House in honor of Sammy's birthday

First snowfall....

Sunday, November 8, 2015

Just Not Okay

Dear Sammy,

Today you would be over the moon. Double-digits. I can't even imagine how proud you would be to join your big brother in the double-digit-club and leave your little sibs behind in the single-digits. Yes, I imagine that you would continue to want to be cool like David.

Because, Sammy, that's all I get to do now. I can imagine how you would act, I can imagine how you would feel, I can imagine what you would do. My imagination is big and powerful but honestly, it's just not enough and it's just not okay.

It's just not okay that you're not here to have a big party (would we?) or bug me for a French horn (would you?) or tell me how many different kinds of cake I have to make for you (might you?). It's just not okay that we're celebrating your birthday with cake and dinner at the Ronald McDonald House. Not because that's not a great way to celebrate your birthday. But it's just not okay that you're not here with us. It's just not okay that I'm not adding 10 minutes to your bedtime (so wait, how late can you stay up?) and it's just not okay that I'm not bringing cake up to your clinic appointment (would you have one? or would there just be a "normal" birthday checkup at the pediatrician?). It's not okay that we picked out gifts and we had no idea what you really would have wanted so we got two things that Yael and Solly thought were things you "might have liked" for us to donate in your honor.

It's just not okay that we're not taking a birthday picture. It's just not okay that there will never be another new picture of you ever ever ever again. How can that be? It's just not okay.

It's
just
not
okay.

And that might be the world's biggest understatement.

Love,
Mommy

2nd birthday: Best Shot Monday
3rd birthday: Birthday marathon
4th birthday: This is your birthday song
5th birthday: Five is a big number
6th birthday: Six is Awesome
7th birthday: Lucky Number Seven and Birthday Boy
8th birthday: Little Things
9th birthday: Birthdate

seven
six -- yes that is a tarantula
five -- and Solly is in utero
four
three

two
one
the beginning

Two ways to honor Sam's birthday: a donation to the St Baldrick's Foundation, funding research that will bring more birthdays for more kids or help our friend Emma Rose to create Movie Night Gift Bags for kids in the HOT unit.


Thursday, October 22, 2015

Revising History

Oh, I have so much to tell you. So many things to write about. And yet this is the one that wrote itself this morning:

Last night....the Cubs lost.

And Yael said: "Sammy would have been so sad. He loved the Cubs."

And here, my friends, is where revisionist history is born.

Because Sam did not actually care about any sports. It just wasn't something he was into. He was, decidedly, a Bears fan. But that was MUCH more about his loyalty to Chicago (the perfect city, in his estimation, (except for that one time) because it had his favorite stuff there like Lou Malnati's pizza and Curry Hut Indian Restaurant, not to mention his house and family, two things that were always on the top of his list), and also EVEN MORE about his cantankerous nature - more than he was a Bears fan, he was NOT a Packers fan. But I digress.

Sam wasn't a Cubs fan. Not because he didn't like the Cubs. But because he'd never expressed any preference, opinion, or interest at all in baseball (or any other sport, for that matter. I'm not sure he actually knew how football was played).

I'm fairly certain that he never attended a baseball game in his whole short life.

And yet, to Yael, he was a Cubs fan.

Revisionist history? Yes.

My response: a big hug.

If he were here, Sammy might have been sad about the Cubs' loss.

But not nearly as sad as his always-little sister that her big brother isn't here to share this, and every, moment.

677 days....
A Bears fan amongst all the Green and Gold
Once, Sammy met a baseball player. A Brewer, mind you.