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.


Friday, February 6, 2015

The Same

Apparently that Sea Creature that Sammy loved so much is coming out in a new movie.

I saw an ad on television the other night.

I watched hours and hours of SpongeBob in the hospital.
Wait, that's not totally true. I listened to hours and hours. I tried to do something else (read a book, write a blog post, take a nap, anything!) while SpongeBob was on.
And wow, he was on a lot. Sam had the schedule memorized.

There wasn't that much SpongeBob at home. It was more of a hospital thing.

So the ad came on, and I asked Michael, "do you think Sammy would still be into SpongeBob? Or maybe he would be over it." We paused for a few minutes...immersed in our own wondering.

He would be a little older than 9 now. He'd probably be telling me, "I'm almost 10, Mom."

What kids like, what they're into, what they find interesting and thought-provoking and entertaining...these things change so quickly, I've noticed. Sure, my kids settle into interests, but I know so well that what they like in one season may change in the next. They grow, they mature, they change, they're exposed to different and new ideas, they meet a new friend who draws them in a totally different direction. And some things stay the same. Some ideas stick with a kid from the beginning, their personalities continue to ebb and flow around those sticky ideas like water around a rock in a stream.

But Sam....is just frozen. Stuck. The same.
All the things he liked and found interesting and entertaining....those are the things we know about him. We will never know NEW things about him. He will never have a NEW idea or a NEW thought or a NEW interest.

We talk about it. "Sam would have liked this," we say. "Sam would think that was cool." Sometimes we extrapolate. "Well, Sammy liked frogs, so he would probably like this green sweatshirt that you're wearing today." But it's a story we tell.

Because we don't know.
We'll never know.

I wish we knew.

About a year ago, I wrote a similar post.
I keep coming back to this idea, I guess.

Sam is probably watching SpongeBob in ALL of these pictures. Hospital parenting 101: TV distracts, and therefore is a great way to get a reluctant eater to consume calories....I have countless pictures of Sam eating while watching television.



THIS little miss is shaving her head again. All new and increased gifts will be matched, so find a friend that you've never asked...and ask that person to donate. Give other parents the gift of watching SpongeBob for years to come.
Yael and her favorite person

Thursday, January 29, 2015

Helpless

This week I discovered something else that Sam's death took from me.
It took from me something that is actually very important to me -- the ability to feel helpful.

Before Sam relapsed and died, I was a Resource.
I could share my knowledge and experience about being a cancer parent, about cancer treatment, about hospitals and doctors, about siblings and pharmacies and inpatient snacks.

I was useful to other parents and families.

And while I actually figured this out a while back, it hit me hard this week.

Our experience, my very existence in fact, embodies their worst nightmare. No one wants to learn from my experience because no one wants this experience. EVER.

And I would never ever ever wish it upon anyone.

Maybe it's just a selfish thing, this way that I'm feeling.
There are other very useful, wonderful, and oh-so-lucky Resource-people out there.

But it's one more thing that I'm missing. It's one more way that my life has changed, even in the brief period that I was useful and helpful...and now I'm not. I wanted our family to be that beacon of hope, I wanted us to be that shining light that helped others to see what was possible. I had imagined it....it was part of what kept us all going. After this is over, we would say.

And the whole thing makes me angry. It makes me cry frustrated tears over feelings that I didn't even realize mattered to me....

Sam is a St Baldrick's Ambassador this year and it makes me so angry that he is the DEAD ONE.* It makes me so angry because he would have been amazing, awesome, simply fabulous as an LIVING Ambassador. It makes me so angry that Sam isn't here to make videos and send messages to kids who need encouragement. He was so good at making videos. He loved helping.

It makes me so angry that his story makes people cry tears of sadness instead of tears of joy. It makes me so angry that we thought he had a whole lifetime in front of him and it turned out that lifetime was only 8 years long....

*Please understand that we are so honored and glad to be working with the St Baldrick's Foundation this year to honor Sammy's LIFE and to help with their very important work. The one thing that I've realized in this new feeling of helplessness is that while I can't serve as a "beacon of hope," I know that the research dollars we raise can and ARE that hope.
Collecting movies from the mail at RonMac. He was so proud of how many you all sent.
Helping to unwrap all the RonMac movies and label them. 
Some more of those donations. Love that look on Solly's face.
Learning to take pills. He was very proud of the skill, and we talked about how he would be able to teach other kids.

Thursday, January 15, 2015

Januaryish

I realized this week that January is a pretty quiet month for our family. No major holidays, no birthdays, and usually a lot of cold weather. I went back through my pictures to look for previous Januarys. (You can tell that January is a quiet month because one year I only took 22 pictures in the whole month! One January, I took a lot of pictures of lunch boxes. So you know it was an exciting month, right?) We really don't even have any "cancer milestones" in January because Sam was never in treatment in this month. He never had leukemia in a January.

We spend a lot of time in our jammies in January.
January 2006
We spend a lot of time just hanging around the house in January.

It's in these quiet, ordinary, everyday moments that I find that I miss Sam the most. When I look around the house with that soft sigh of contentment that it's warm and cozy, that we're all together, that everyone is happy ensconced in toys or books or games...and the electric shock of realization that he just isn't there jolts me out of that moment. I look around at the other kids and I wonder....what would Sam be doing right now? Would he be reading a book? Playing a game? Wearing his pajamas?
January 2008
Holidays and birthdays and milestone days are big and bright and oh so hard.

But the regular days, the everydays, the day-to-days....these are even harder. The doctor's appointments and dentist appointments and play rehearsal schedules and soccer clinics and birthday party invitations and what's for dinner and where are we going this weekend....these are the times when it hits me over and over again that I'm moving around a lot of pieces and a lot of parts and a lot of people...and yet I'm still coming up one short. Each and every time.

January is a quiet month.
It's in the quiet that I miss him the most.

(Pardon all the pictures. I couldn't choose just one January.)
January 2008 - once a "throwaway" picture....
January 2009 - hanging up family pictures
January 2010 - looking at bugs at the museum
January 2010 - oh how he loved the butterflies
January 2011 -- oh, that face
January 2011 -- loving on his baby bro
January 2011 -- pile o' kids
January 2012 -- um, what!?
January 2013 -- my forever four
January 2013 - what kind of mom does this!?

Thursday, January 1, 2015

Yahrzeit

A year has passed...and then some.
And yet today we come to the 11th of Tevet.

You see, as I've said before, I live with so many calendars....but the two that are most familiar to the rest of the world are the Gregorian (today is January 2nd) and the Hebrew (today is the 11th of Tevet).

They're never exactly in sync because they don't need to be. Bear with me for a brief explanation.

The Hebrew calendar is based on a lovely hybrid of lunar and solar. Its complex organization was set down a long time ago by a wise group of scholars who figured out how the lunar calendar by itself would not be organized enough for us, the People of the Detail. Left untended, the lunar calendar would rotate throughout the solar year, and holidays that celebrate the fall harvest could regularly fall in the lush green of spring. So the hybrid came to be, adding in not a leap day, like the solar calendar, but a whole month.

If you'll recall, 2013 was the monumental year of Thanksgivukkah. Two holidays that had never come together quite like that before and won't again in our lifetimes. Of course something impressive happened the year that Sammy died, right?

But what that interesting detail of the calendar did was to also give Sam a most interesting, and possibly frustrating, Hebrew Yahrzeit date. Today is January 2, 2015. We did not observe Sam's Hebrew Yahrzeit AT ALL in 2014. And it will show up again on December 23, 2015. Yes, you read that right, twice in 2015 and never in 2016. We'll only ever see his Hebrew date in the "odd" years. (Until 2026, by the way....and then....well, I'm sure you'll still be reading my blog then.)

I live in two calendars, and right now I'm in Israel, a place where people actually know when the Hebrew date is, for the most part. Another interesting thing to note is that the 10th of Tevet is a minor fast day, and so of course, I'm never going to "miss" the 11th.

So what is my point? I'm not even sure. Both calendars matter to me, and both are a part of the rhythm of my life. I will say Kaddish today. Perhaps someday we will observe only one Yahrzeit, but I doubt it. Perhaps someday the other calendars that live in my head will fade, and I won't think about Diagnosis Day, about Transplant Day, about The-Day-We-Googly-Eyed-The-Whole-Hospital.

Maybe not.

Transplant Day
Diagnosis Day

Googly Eye Day


A year ago today: Paper Time