Wednesday, April 8, 2015

Crystal Clear

Some days stand out, crystal-clear, in my mind.

Like this one, three years ago:



We went to the park. It was a newish park, and new-to-us. It was a beautiful, slightly chilly spring day, as you can see by the hoodies and jackets. It was Passover, and I remember bringing a whole box of matzah crackers as a snack. I think it was Spring Break.

Why do I remember this one day?

Nothing particularly special happened. My kids frolicked, literally frolicked, in the spring weather. They bounced and climbed and ran and slid and swung.

Let me be clear -- we go to the park all the time. But I can practically feel the cold metal bars of the bench under my bottom and the sun on my face as I think about this day, three years ago, a day that was really unremarkable.

And it's unfathomable to me that Sam probably already had leukemia in his body. 

Some days stand out, crystal-clear. I keep rolling this clear memory over in my mind, savoring it, loving it, remembering it for what it was -- one of my last perfect days, when cancer didn't hang over us, when danger was never on the horizon, when I lived in a bubble that I never, in my wildest nightmares, believed could be burst in the way that it was.

(Just 42 days after this one, he announced that he felt pain in his arms, and 65 days later....the diagnosis.)

I keep rolling this clear memory through my mind, feeling the chilly bench, breathing the cool spring air, remembering the shouts of glee, the eager games, the sliding bodies and running feet...and wishing that we could just go back, just for a few moments, to that place of perfection....I wish I had so many more of these clear memories, these perfect days. I wish I had taken even more pictures, I wish I had written down more stories, I wish I had documented every minute, every second, every breath and every heartbeat....

481 days since I last kissed his little head.

Two years ago today

Sammy's NP, Molly, is walking her own scary path and she's raising money for the Leukemia-Lymphoma Society. Read her thoughts on our Sammy here and we've given her one of Sammy's drawings to sell in a t-shirt, so you can buy an all-new, original Sam Sommer t-shirt here. This is a lady who knows the value and benefit of research dollars, let me tell you.

Friday, April 3, 2015

Snippets

Snippets of the last couple of weeks...

The last Passover we spent with Sammy...
The way he loved the frogs and the silliness, how he really didn't like matzah at all...
Remembering him and knowing there's always an empty seat at our table.

We gathered together for a family picture and Solly says, "We have to wait for Sammy!"
There was an audible gasp..."yes, Solly, we all want to wait for Sammy."

In the US, there's never a personalized necklace with Yael's name on it (in Israel, she's always lucky) but that never stops us from looking. And of course, there's always a Sam. How could I say no to a heart locket with "Sam" written on it? She doesn't want to take it off.

January, February, and most of March -- these are months in which Sam never had cancer. Months in which he never spent a night in the hospital. But now it's April, and for the rest of the year, each date is seared into my memory, a day to think about where we were on this day....

Would he be teaching Solly the Four Questions?
Would he be counting down the days til camp?
Would he be finished with all 7 Harry Potter books?

Forever....we will wonder.

Forever...we will miss him.




Sammy's NP, Molly, is walking her own scary path and she's raising money for the Leukemia-Lymphoma Society. Read her thoughts on our Sammy here and we've given her one of Sammy's drawings to sell in a t-shirt, so you can buy an all-new, original Sam Sommer t-shirt here. This is a lady who knows the value and benefit of research dollars, let me tell you.

Sunday, March 22, 2015

Older

When Sammy was 8 years and 35 days old, he died.

Now Yael is 8 years and 35 days old.

Everyone has gotten older.
David was always older, so his advancement in years didn't seem out of place.
Solly was always so much younger...

But Yael? Always the 15-months-younger little sister?
Tomorrow she will be older than Sammy was when he died.

I don't think that she is really aware of the moment that she surpassed her older brother. In some ways, it's every little sibling's dream, right? But when you think about how it actually can happen...it's certainly much more of a nightmare. I know that she misses him every day, that her world is so far from the way that she wishes it was....the dream of a little sister to catch up to her big brother is most definitely NOT what she wanted.

None of us did.

How many kids do you have?
Four.
How old are they?
13, 8, 8, and 4.
Twins?
Not exactly....

It never gets easier, does it?

464 days since Sammy died. One year, 3 months and 8 days.

One year ago....Yael wrote a book about Sam
Two years ago....we were planning a celebration
Three years ago....we had no idea that childhood cancer could crash into our lives

This is Sammy, 8 years and 35 days old



Friday, March 13, 2015

Springtime

Sam relapsed at the very end of March in 2013.

Today I spoke at a St. Baldrick's event, and I stumbled a bit. I said, "last March," and then I realized that it's now TWO YEARS ago that he relapsed. I corrected myself and I almost lost it.

Two years.

I am somewhat stunned by this.

We lived through all of 2014 without him. And we're 3 months into 2015...it doesn't seem to get easier to think about slogging our way through years and years of this.

And yet we do it.

There are birthdays and plays to attend and movies to watch and a couple of fish that followed us home from the Purim Carnival. There are heads to shave and stories to tell. There is snow melting and spring coming and bike riding and so much that fills my broken heart with love.

Sam loved spring because he loved to be freed from indoors, ready to head outside and seek out the bugs and rocks that he loved, ride his bike as fast as he could, feel the wind on his face. When he was a very small baby, I would take him on walks even when the weather was cold. He complained (as only a baby could complain) when he was covered and calmed down immediately when the wind was in his face. He loved the fresh air...

We breathe it in...the renewal of spring that shows such promise this week. The air is warmer and coats are coming off. We breathe it in and I know that another season beckons...another one without Sam...another one in which his life still fills us with love.



Solly wears this coat now.

Wednesday, February 25, 2015

Magical Thinking

Sometimes it feels like Sam was just here. 
And sometimes it feels like maybe it was all a dream...

He's always on my mind, of course, in that way that all of my children are on my mind. Even if they're not with me, I have a pretty good sense of where they are all the time. (I'm fully aware this is starting to change with the teenage-stage, but that's probably for a different blog entirely.)

And Sam comes up ever-so-casually in conversation, most of the time.

Solly used to talk about him at bedtime nearly every night. "I miss Sammy," he would say in a plaintive tone.

He hasn't done that lately.
But last night, out of the blue, he said:

I really miss Sammy and I want him to appear back. 
We need some magic. 

Chase has some magic but he used it all up. 
I'm going to ask him to get some more from his mom and we can use it to make Sammy appear back. 

I sent Chase's mom a message, a transcript of this conversation.
I told her, "Apparently, Solly thinks you are very powerful."

And what she told me was a little bit surprising to me.
Remember, we're talking about four-year-olds here.

She said that her son, one of Solly's besties, talks about Sammy all the time. And when she questions Chase about it, reminding him that he never even met Sammy, he replies,

"but he's Solly's brother and I love him."

I have no idea how much Solly talks about Sam when he's at preschool. But it's clearly enough that his friend also knows and loves our Sammy. And I'm so very glad.

438 days is a LONG time for a four-year-old to do anything.
He's changed a lot in the last 438 days.

But I know one thing for certain, absolutely and completely: Solly hasn't forgotten about Sam.

And I know that Sammy would be so glad of it.

Now we have to work on explaining that not even magic could bring our Sammy back.

Tuesday, February 24, 2015

Shaving Again

6 Reasons I’m Shaving My Head on March 1st
by Yael Sommer

1. Because my brother had cancer. It was upsetting and I didn’t get to spend a lot of time with my mom or my dad or my brother. It was hard. I really miss Sammy.

2. To help other kids with cancer. It helps the doctors get new medicines to make their cancer go away.

3. Because I get to do it with a lot of people I know and who I love. That is special because they are my really good friends.

4. I am also doing it with my mom. Last year we both shaved our heads but not together. This time we get to do it together.

5. I am also doing it because my mom said that if I do it, I can dye my hair pink before I shave it. She’s going to dye hers purple. I think we are going to look awesome. If Sammy was here I think he would be crazy amazed.

6. If Sammy was going to be there when we shaved our heads he would be laughing the whole entire 
time. I really miss hearing him laugh. 


To donate to Yael's head-shaving campaign: https://www.stbaldricks.org/participants/yael

6 Reasons I'm Shaving My Head on March 1st 
by Phyllis Sommer 

1. I have looked at this from all angles, and I really and truly believe that the only way we are going to make a difference (short of going to medical school and actually doing research MYSELF) is to raise money for research that will help to put an end to childhood cancers. Research that will make the treatments better. Research that will help more kids to live. LIVE.

2. Sam is a St Baldrick's Ambassador, and I'm intensely proud that his sweet face is one of those that help the SBF do its great work. (And don't forget that all of new and increased donations to our pages will be matched!)

3. It's been almost a year since the first time I shaved my head and I can honestly and truly say that hair grows back. I am evidence of that! My sweet and sassy Sammy will not. This is an important truth. My bald head helps me to share that lesson.

4. When I floated the idea of shaving again, Yael's enthusiasm for joining me definitely was an inspiration. I love that she had no qualms about going bald for the second time. Last time I held Michael's hand while my head was shaved. This time, I will hold her hand. She's much braver than I am.

5. I must admit, I'm a little excited about our cool hair colors. Sure, it's silly and fun. But it's just one more way to draw attention to the head-shaving and to the St Baldrick's Foundation. I've always wondered what I would look like in purple...

6. Yael's last answer is one of the best ones, so I'm going to borrow it: Sammy would laugh. I, too, miss his laugh. I miss everything about him....

To donate to my head-shaving campaign: https://www.stbaldricks.org/participants/mypage/746574/2015


Monday, February 9, 2015

A Long Time

It might just be an algorithm of the Wii system.

This showed up the other day...


Yeah, me too.
Sigh....it's been such a long time.
423 days to be exact.

So many days that I have lost count. I had to look it up.
It's been a long time since I've seen him and the days just keep piling up....


One year ago: Just Like Sam

I'm shaving my head again, on March 1st. It's all I have to give....hair grows back. Sammy won't. Help me raise money for very-much-needed research...thank you.