#blogElul 25: begin

As the month of Elul comes to a close in a few days, I'd like to use this opportunity to draw your attention to the secular month of September, which begins tomorrow.

Last year, for the very first time, I learned that September is Childhood Cancer Awareness Month. Which meant, frankly, that I used to be very un-aware.

(And nevermind that I am now fully and completely aware of childhood cancer EVERY month. Nevermind that, okay?)

What does this mean?
Did you know that in the US alone, 36 kids are diagnosed daily with childhood cancer?
Did you know that in the US alone, 7 kids die each day from childhood cancer?

Sigh. Childhood cancer isn't pretty or shiny. Even though we are often smiling, there are lots of times that we aren't. There's a lot of pain and worry and fear and that's just from the parents. You can imagine how bruised and battered our kids are...

Tomorrow begins a month of story-sharing, statistic-quoting, and gold-wearing.
Maybe people will get so used to it that they won't stop.

Here are some links to cancer posts, videos, etc, that are all designed to make you so crazy that you will stop at nothing to join in the fight against childhood cancer...and of course, you can always read about our journey at Sam's blog.

Are you sick of all this cancer stuff? -- by Nicole Scobie
Breaking News! Childhood Cancer is Not Rainbows! -- by RockstarRonan's Mom, Maya
Lock up September -- at the FourSquare Clobbers Cancer blog
Childhood Cancer Stories all September -- by MaryTylerMom

All of these blogs are hard to read. Be courageous and subscribe to one or all of them. Read the stories, feel the heartbreak. Get mad and do something....it's a good time to begin.

Feel free to grab one of these and share it....share it....share it.

The Jewish month of Elul, which precedes the High Holy Days, is traditionally a time of renewal and reflection. It offers a chance for spiritual preparation for the Days of Awe. It is traditional to begin one’s preparation for the High Holy Days during this month with the Selichot, the prayers of forgiveness. We look to begin the year with a clean slate, starting anew, refreshed. All month, along with others, I'll be blogging a thought or two for each day to help with the month of preparation... I will be blogging here, and sharing #Elulgram photos on the same themes at imabima.tumblr.com. Follow me on twitter @imabima for all the #BlogElul posts, not only mine but others' as well! This year, I'm not doing a linky or anything like that -- I'm conserving energy! So be sure to tag your posts on Twitter and Facebook so I can catch them with my alerts....

Narrow Bridge

I walked into the gym at 5:40 this morning.
I sat down to put on my spinning shoes.
And a wave of something like grief washed over me.

I haven't sat down to put on my spin shoes at the gym since...
since before Sam relapsed.

For just a moment, I put my head in my hands.
I breathed in deeply, staving off the dizzy wave of realization and fear.

The world is a very narrow bridge.

I rode my bike.
I sweated.
I stopped at the store.
I grabbed a latte with the early-morning crowd.

And I came back home to some kind of normal...some kind of reality.

All four of them bouncing around.
Breakfast.
School books.
Piano practicing.
Coffee drinking (okay, that was just me.)

The world is a very narrow bridge
but the important thing is not to be afraid.

This in-between at-home-but-knowing-it-is-temporary feeling is unsettling.
The in-between bridge is narrow.
And the end is foggy.

The home-health nurse came for a visit.
She took vitals.
She asked questions.
We flushed his lines after she left.

It was like we had never taken a break.
We remembered exactly what to do.
I wanted to forget.

But the important thing is not to be afraid.

The important thing is not to be afraid...

A Different Kind of Counting

We are in the period of the Omer, the days between the second day of Passover and Shavuot. 

Jews are very into counting.

Each year, I find different ways to observe the Omer. The counting lends rhythm, it is special. More and more of my colleagues and friends are counting the Omer, particularly using social media. It's a really wonderful way to connect and learn new lessons, to remember the day, to sense the passage of time in a communal way.

But this year, my Omer is different. The counting in which I'm engaged is different.

We're counting hemoglobin and white blood cells. We're counting neutrophils and platelets.

The official lap-counting board on the HOT Unit

We're also counting days and weeks, we're counting visitors and jokes. We're counting laps around the unit and we're counting antibiotics and degrees of temperature. We're counting ounces of water consumed and calories taken in.

Counting the Omer has taken on new meaning for me this year. We count up to Shavuot, we add the days...we don't count down. We are reaching, rising, moving forward from the slavery of Passover to the freedom of receiving Torah.

Sam's symptoms began to present themselves on the second night of Passover, the night on which we begin to count the Omer. He entered into the hospital on the last day of the holiday, and we began the count-up....through the slavery and degradation of chemotherapy and treatment into the freedom of healing...

We're not there yet. There's a lot of counting left to go.

Each year we count the Omer. Each year we remind ourselves of the journey from slavery to freedom. But this year, my family is living it. We are walking the road, we are traveling the journey.

Like the Israelites, we are afraid, we don't know what's ahead, we don't know what pitfalls we will face. But we can see the mountain, we can see the high place of light ahead of us.

We're counting up...up...up.

Where You Can Find Me

In case you're looking for me, I'm mostly over here these days.

Unfortunately, things have taken a step backwards into Cancerland.

Gam zeh ya'avor. This too shall pass.

No Worries Here

Cross-posted to Superman Sam's blog...

Tuesday, 2:23pm: Snow is falling thickly outside. Afterschool activities have already been cancelled. I'm in my comfy clothes, working on the computer while Solly naps. When the phone rings, and I see that it's the school, I assume it has to do with the snow.

School nurse: Hi, I have Sam here and he says his knee hurts. And he is worried because it's just like before.

If I tell you that I nearly dropped the phone...if I tell you that I burst into tears...if I tell you those things, I know you would forgive me for losing my cool.

I asked to talk to Sam. In a very calm, small, quiet voice, he said, "Mom, it feels just like when I was first diagnosed."

I swallowed hard.
My seven-year-old knows the word "diagnosed" and uses it properly in a sentence.
We discussed whether he should stay at school or not. With the snowstorm, and only about 45 minutes left in school, he decided to miss gym but rejoin his class for music.

And I called the clinic.
In tears.

They were, as usual, amazing.
As a fellow pediatric-illness-parent-friend said to me, they know every nook and cranny of the cliffs that we are ready to jump off. This one was a pick-up-my-kid-in-a-near-blizzard-and-drive-all-the-way-to-Milwaukee-for-an-MRI kind of cliff.

But they talked me down. He had gymnastics on Monday. Maybe he wrenched it? His joints and bones could be affected by the chemo and this could just be residual effects. It could just be normal-kid-aches-and-pains.

Sam had a clinic appointment scheduled for today, Friday. A regular check-up. The ones that I'm not supposed to worry about. The ones that they told me were just for routine.
That we would notice symptoms if anything was happening.

Tuesday night, he limped around. He took a bath. He snuggled while we read Ramona Forever.
As he went to bed...he said, "I hope it's not leukemia."

I said, "me too."

By Thursday, he was fine. No pain. Except the one inside my stomach, waiting to have a medical professional PROVE to me that he was fine.

I was up all night last night waiting for today's drive to Milwaukee. What would the results say?

It's all fine. He's fine.
Numbers normal.
No worries.

Well, not at least until next time there's a false alarm, right?

Chocolate pudding & a movie at 10am? You know we're in Cancerland for the day.

Fragility and Strength

Fragility and Strength: A Litany of Hope for Sukkot

The Sukkah is a symbol of fragility.
We build the temporary structure each year and know that it is only meant to last for the week-long holiday. It sways in the breeze. The raindrops land inside. The animals nibble at our decor. We know it could come crashing down on us.

The blessings of our health is so fragile. The vibrancy of our children sways in the breeze, and sometimes the raindrops hit our lives. A diagnosis...it all comes crashing down.

The Sukkah is a symbol of uncertainty.
We don't know what tomorrow will bring. We only know that here and now, we stand together in our uncertain structure. We build without looking at the weather forecast. Will this be the year that snow keeps us inside?

What will tomorrow bring? Will the next test show a new worry? Will the next day bring pain and tears or will smiles rule the day? Day by day, each one is different. We don't know what we don't know.

The Sukkah is a symbol of hope.We build the structure, knowing that we will celebrate even if its isn't perfect. We know that it will be messy and there will be bugs and breezes and leaves floating in the soup. And yet we call this time "zman simchateinu," the time of our rejoicing. We celebrate.

We believe that he will return to health. We must hold on to the hope of the skilled hands of his doctors and nurses. We fight and fight and fight because we see the future in his eyes. We talk about tomorrow and tomorrow and tomorrow. We plan and prepare. And we celebrate today.

The Sukkah is a symbol of our strength.
We build, knowing that we are vulnerable. We build, knowing that it may all collapse. But we still build. And that is our strength. Year after year, we build and re-build. We share our fragile strength with others and we grow stronger.

We are strong because we continue the fight, and we are not alone. For Jack and Ian and Jake and Eric and Bo and Carli and Hannah and Cara and Ari and Mia and Mya and Aidan and Donna and Blake and Sam and...Day after day...we build, knowing that we are vulnerable. We build, knowing that it may all collapse. But we still build.

Zman simchateinu - each day of life is the time of our rejoicing.  

November 10, 2018

It seems far off, right?

It's Sam's Bar Mitzvah date. 2 Kislev 5779.
His parasha will be Toldot. It's a good one. One of my favorites.

Sam's 13th birthday is on a Thursday AND it's Rosh Chodesh Kislev. But I figure we'll wait two days until Shabbat to make it more convenient for folks. Time is on our side.

I like to plan ahead.

There will be many many many milestones between now and November 10, 2018.

But this is what I'm focused on right now.
With three rounds down and one to go...a mama has to make plans.

Because even though sometimes God laughs at the plans, they are exactly what we need to keep going. Plans grow from hope. Or perhaps they ARE hope. Either way, it's one of the things that is driving me through all of this.

I'm not going to write about cancer forever. I'm going to write about other stuff - B'nai Mitzvah, weddings, and a whole heap of other good, NORMAL things.

My friend Anne imagined it right at the beginning.

I've latched onto it...it is my beacon. I can feel the handle of the Torah scroll in my hand as I watch and hear him read Torah. I can hear him chanting the brachot. I can even imagine him playing an instrument - some days it's sweet, like a flute. Other days, I cringe when I imagine him setting up a drum-set on the bima. I play it out in my mind. The bagels and kugel. The frog-and-turtle-green kippot. The hand-made tallit with love woven into every stitch. The count - how many years that he has been cancer-free? The tears. The reluctant hugs. The wide smiles.

Mark your calendars now.

Blessing in a Hospital Room

When my son, Sam, was diagnosed with acute myeloid leukemia (AML), one of the first things we learned was that the hospital was about to become our home.

For about a month at a time...at least four times.

After this sunk into my brain, I started to consider how the room could become home-like for Sam. And for us.

Home is where you hang your mezuzah, after all.

In my foggy brain, I recalled that after 30 days, a mezuzah is usually required on the door of a dwelling. But without doing any research at all, I knew that even if we were here for 300 days (God forbid), I wouldn't want to believe that this was a permanent dwelling.

No way.
No way.

So I started to think about what we could do instead of a mezuzah. After all, its basic underlying purpose is to bring blessing upon the home, to remind us of our connection to God our community and the blessing that these connections are to us. So I went to our home and I looked around for a symbol of blessing that I could transport to this temporary dwelling place.

I looked around and saw the chamsa art pieces hanging next to my bed. I bought them in Israel and consider their presence to be a beautiful reminder of the blessing of Israel...and the chamsa is, of course, an amulet for protection. Perfect. So I scooped them off the wall and hung them carefully in our hospital room. (Using lots of tape.)

Not only is it a blessing, but a reminder of home. When our time in the hospital comes to an end, I will place these amulets back on the wall at home. I will say a prayer of gratitude and thanksgiving, a prayer of survival and success. Trust me, I'm planning ahead.

For now, its presence brings blessing here in the hospital.
A blessing for protection.
For hope.
For health and healing.
For us.

For those interested: the halacha (legal interpretation) of mezuzot actually suggests that a hospital room is, in fact, a temporary dwelling that I do not own. Therefore I am not required to place a mezuzah on the door no matter how long our stay in the room. In addition, I have learned that the practice of reaching up to touch the mezuzah upon entry into a room can actually spread bacteria in a hospital and is now discouraged in Israeli hospitals. "Air-kissing" the mezuzah is now the suggested practice.

Change in Routine

There are so many changes in our routine these days.
We notice a lot of things.
But this one is pretty big...
Our family isn't going to camp.

Don't worry, my kids are.
Camp is still one of the most important things in my life, one of my inspirations and my passions.

But this year I have a different place to be.

Today was one of the hardest days.
Because today was the day that we were supposed to all be at camp.
Together.
With our friends.
And yes, I know how blessedly lucky we are to spend the time together at camp each summer.

So we had to find a way to mark the occasion anyway. Tomorrow is the first day!

It's not quite the same.
But perhaps a new family ritual has been born....


See all the posts I've written about camp in previous years.

Owie Owie Owie...Ding!

We tend to follow to the school of parenting that minimalizes things:
Did you bump your head? We'll give it a nice gentle rub and a big kiss.
Is there an owie? Here's a bandaid. Are you sure you need a bandaid? Is it bleeding? Can I just give it a kiss and it will be all better? Okay.

Michael heard a comedian, Alex Cole, do a routine many years ago.
He explained that a magic way to cure any "owie" is to rub it three times and say "owie owie owie DING!" And we still use that wisdom. There's a hand motion to the "ding" part, by the way. It's all in the showmanship.

We're not callous. We dole out kisses and gentle pats and caresses. We hug and we wipe tears.
But we tend not to make a big deal of things.
"Are you bleeding?" is frequently how we start a conversation with children who come downstairs after bedtime shema and kisses.

Today, Solly got a little bump - I don't even remember what he was doing, it wasn't that big of a deal -- and I gave his little kepele (Yiddish for "little head") a little kiss. "It's okay," I said. And he waddled off...

And as I breathed in his baby scent, I realized that leukemia just doesn't work that way.

There's no owie owie owie ding.
It would be much easier if there was...

Sometimes a hat and a visit from Dad seem quite curative, though.

Take the Old and Make it New, Take the New and Make it Holy

That title above (a little longer than a usual blog title), is one of my favorite Jewish ideas.

We are always looking at "old" things and bringing them into a new day.
Then we are tasked with bringing holiness into each new day, new idea, new plan.

About two years ago, I learned to do a 6-strand braided challah.
It makes perfect sense to me to braid 6 strands, one for each member of my family.
I braid in the love each week.

This is NOT a challah I made. Mine are never this pretty. So I borrowed this picture from Instructables rather than show off my somewhat embarrassingly funny looking challot. My challot taste wonderful. Someday I will master the art of beautiful appearance as well.

On Thursday night, I baked challah. I usually do it on Friday, but I knew that I was headed up to the hospital to spend Shabbat with Sam, and I wanted to take a challah with me. My regular recipe, from my friend Ruth Ross, makes two challot, but often I only bake one and freeze the second batch or make a set of cinnamon rolls for Shabbat morning. As I divided the dough in half and started rolling the strands, I realized how precious this shared challah was going to be.

Six strands, representing the members of our family...one batch split into two challot...eaten separately but spiritually together.

An old ritual - making challah.
Now made new by circumstances that I never ever imagined.
But yet...we find holiness, even in the newness.
In the darkness, we find light.
Even if it's only a piece of bread, it brings comfort.
If we don't look for the light, we're going to end up sitting in the dark.
So we eat challah and salt it with our tears....

Nothing is the same

Many of you may know already, but things have changed for our family.
Our son, Sam, was diagnosed with leukemia.
It is rotten awful terrible SUCKS.

But since I'm nothing if not consistent...a blog has begun.
Superman Sam is open for business.
I want to tell Sam's story...for ourselves and our family and friends.

I hope the blog is really really really short.
And I am planning for a happy ending.

Thanks for joining me.
Thanks for loving us.
Thanks for everything.