Nothing

I'm standing in Times Square. They're lighting it gold for childhood cancer awareness. I am physically present. I'm there but not there.

I've been on Facebook, but am scrolling by a lot of the posting if it is about childhood cancer. I'm walking down the street when the words “awareness fatigue” pop into my head. The words stay. They fit.

I am not sharing pictures of Jacob on social media.  I only want to do that if it's not about cancer. He was more than just cancer. Even when he had cancer his personhood transcended that.

I'm not into him being a spokesperson. I am not making him a mascot. I'm leaving him be. This feels odd to say because he died. But he has better things to do.

I have better things to do with him.

We run into some nice people at Times Square. Childhood Cancer is like a small town. Everyone knows one another.

Hannah is with us. Noah is not. One of our friends asks after him. Noah doesn’t do awareness, Jeremy says.

A warm feeling envelops me. This is the best thing I’ve heard anyone say all day.

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The Best Thing Someone Never Said To Me

Rubric

Hotdogs

I Stand Corrected

I'm thoughtful. I like to think I bring something to the table in all conversations. One of these things is a healthy sense of perspective.

You're so right! People say a lot. This is fine. I'd be lying if I didn't say it doesn't feel good to be validated.

But sometimes I'm wrong. When this happens I like to get to the acceptance phase as soon as possible. I like to come clean and admit that I'm wrong.

I'm going to be using this blog to write publicly about times where I stand corrected. When something comes up or I remember something from the past, I'll write about it and post it if it's not something that will get me in too much hot water.

This story begins at my kids' elementary school. I was there doing Class Parent stuff. I had one kindergarten kid and one first grader there.

I'd been asked by a teacher at the school to come in and help in her classroom. This teacher was not my kindergartner's teacher or my first grader's teacher. She needed some help filing homework papers.

Of course, I said yes to helping this teacher because the elementary school was a community. Also this teacher needed some help because her own class parent, co-class parent and class parent assistants had fallen down on the job.

The plan was for me to spend a period in there filing papers at her desk while she was out of the room. While she was on break, her class would have a period of art. When she came back, I would exit her room and then go to my Kindergartener's class to help serve the snack I prepared for the class. It was my turn to provide a healthy snack without added  sugar or hydrogenated oils.

I got myself settled into the teacher's chair. I lined up the papers, folders and labels. I started working on my task.

At the same time, an art teacher I'd never seen before entered the classroom. This was the first and last time I ever saw this art teacher. It may have been that she was a substitute art teacher. It may have been that she was a real art teacher but only lasted at this school for a few days. This happened sometimes. The third and final explanation is that the school could only afford a couple of days of art and this was one of them.

An older dad who was also a class parent made a beeline for me. I'd said hello to him a few minutes ago in the hallway.  He was assembling some shelves. The man was always busy.

I was on friendly terms with this older dad. We had a mutual respect for one another due to our respective work ethics. I'm not ashamed of hard work, he liked to say.

Sometimes he could be a bit of a pain in the neck. He could be rigid about how he thought things should be. Sometimes he made a big deal out of little things. I predicted that he was about to do this now.

He approached me with a sense of purpose and importance. Listen, he said. I wanted to catch you before the teacher got started. He took a quick glance at the art teacher.

That lady art teacher has a baby voice. He whispered urgently.

Now I've heard a lot of things from other parents at this school. Allegations of egregiously non-progressive teaching methods in a school that was supposed to be progressive. Someone who brought Frosted Flakes to snack. Someone else at the PA meeting who helped herself to an entire triangle of Brie thinking it was flan.

This was absolutely ridiculous and not worth talking about. I told the dad so much, using the nicest words I could.

He slammed his hand lightly on the desk. He really wanted my attention. He had this look like I'm saying this for your own good.

This room hasn't had a class parent in here for three weeks I say. I've got until next period to finish this filing. I look over at the clock.

Don't say I didn't warn you, he hissed. Then he exited the room to go back to the job he was working on before the petty concern came up. I went back to affixing labels on files, writing kids' names on them, and filing homework.

The art teacher cheerfully unpacked the art supplies from the big, artsy cloth bags she'd brought in. The class eyed her. Some of the kids seemed eager to begin an art project. But many of the kids prepared to test this teacher. That is what they always did whenever the regular teacher was out of the room.

The art teacher addressed the class. Can I have your attention please?

I could feel the blood draining from my head. To say that this teacher had a baby voice was a gross understatement. The teacher had an extreme baby voice.

Excuse my language. This shit was intense.

Once the art teacher got talking to the class, she was really on a roll. Just as I felt I had adjusted to the baby voice, it’d startle me again. I wondered if there was such a thing as a voice disability. Baby voice disorder or whatnot.

This teacher deserved compassion.

It was hard to know where to look. I didn't want to look at the teacher. I didn't want to look at the kids. I didn't want to look at the homework files. I settled on looking out the window. I needed to gather myself.

Then the older dad found another excuse to come in. He and I locked eyes. He saw the look on my face. He gave me a look that said I told you so.

I knew he was right. He knew he was right. I knew he knew he was right. He knew that I knew he was right.

At that point, in a gesture of quiet surrender, I put my head down on the desk. I had no more fight left. I left it there even after the older dad left.

Soon, the regular teacher came back. The class was in bedlam. She clapped three times and applied some expert management techniques. I learned from my kids' teachers that this was called bringing the class back.

Once the class had a semblance of control, she approached me. How were they while I was out? She asked. Pretty terrible, I said truthfully.

The teacher took a deep breath. Do you think it was because of the baby voice? She asked. I mulled that over for a moment. I don't think so. I said. The kids are always like this whenever their classroom teacher is out. It could be a substitute, it could be an enrichment teacher, it could be a lunch aide. Every class in the school is like this, I added so she wouldn't think it was just her class. Because between you and me, it wasn't just her class.

I then went to the other classroom to help serve snack. If I had longer, I could have elaborated. I could have told her that while the baby voice certainly didn't help the kids behave, it wasn't the baby voice's fault. I could have said a lot more about why this happened. But I didn't. I didn't have all day.

Say His Name

One recent Sunday, Hannah, Noah and I made our way to Clinton Cove Park for the 5th Annual Hope & Heroes Walk. Every year, Jeremy and I form a team to honor our son Jacob. For those of you reading my writing for the first time, Jacob died several years ago from childhood cancer. Jeremy was already at the walk because this is a busy workday for him.

We were wearing our Team Jacob tee shirts. Jeremy lovingly designs a team shirt every year, with my input, around a theme we both come up with. This year's theme was a waffle, one of Jacob's favorite foods. Jeremy developed a very special high calorie, nutritious recipe for Jacob because during treatment, he needed to gain weight. The recipe appears on the back of our shirt.

As the three of us approached the event, we noticed the usual number of enthusiastic volunteers. Most were extroverted young women, and all were smiling widely and cheering as walkers entered the balloon festooned event. They clearly were having a great time, making happy spectacles of themselves, wearing shiny wigs and other colorful accessories.

As our little party of three got closer, the cheering and clapping grew louder. Go Team Jacob! They screamed. They waved their pom poms and jumped up and down. My teenagers found the scene a little overwhelming and cringe worthy. I loved it. I waved and clapped and cheered for ourselves, Jacob, and the day, which was brilliantly sunny.

Last Year's event was marked by bone chilling torrential rain, but the same number of volunteers were out then, cheering and encouraging, making me feel better than a celebrity on the red carpet.  It’s one of my favorite parts of the walk.

Since I've noticed before how much I love the cheering sections, there was no mystery that I would enjoy it again this year. But there was something about the thrill of electricity I got when they shouted the words Team Jacob that made me a bit more thoughtful about it.

It wasn't until the next day, when the busyness and excitement let up a little, that I realized what was going on. The jolt of happiness was all about hearing his name. I heard the name Jacob from the cheering section. I heard the name Jacob in conversation as we walked. I saw the word Jacob on signs, tee shirts and stickers. His name was everywhere. I could see it. I could hear it.

When you have children, people ask you about them all the time. You take hearing their names for granted. They ask you how they are doing in school, what they are doing for the summer. Their names are banded about casually, many times a day. I enjoy talking about Hannah and Noah in all sorts of ways. When children are alive, there is always something new to report.

But when your child dies, the name you so lovingly chose, the one you proudly shared on a birth announcement and party invitations, heard called at the Pediatrician, later the hospital, and finally the memorial service can seem conspicuously absent.

You learn quickly after the child dies, that the name of the child you still love, can silence a room of people and startle those not expecting to hear that you are the mother of three. Many people haven't gotten the memo that it is okay to talk about this child.

The Hope & Heroes Walk is not the only place I feel comfortable saying Jacob's name, but it is one of the easiest and best.

Jeremy and I have attended various bereavement retreats and support groups since Jacob died. These have been lifelines for us. They are places where it is completely normal and encouraged to talk about your child who died.

At one of the groups, they have a tradition of everyone in the group holding hands and each person saying the name of their deceased child. If there are 30 people in the room, I have a sense of mass tragedy by the time everyone is finished. That is because that is exactly what it is.

I think that this is a poignant and important thing to do. At the same time, it leaves me devastated. I'm like a dishrag by the end. Then it is over. Going to lunch and socializing after such an experience feels surreal.

The walk stands in contrast to this. I'm not saying that the walk is better than the support group. There is clearly a place for both in my life.

The walk reminds me so much of Jacob himself. Jacob was a very sunny person and a social butterfly. He was popular and well liked. Everywhere he went, people were happy to see him. And he was happy to see them.

That larger than life personality of his reminds me of the cheering sections, the upbeat music, the sun of 2014, the driving rain of 2013. Seeing doctors and nurses there, even though if they aren't from his medical team, remind me of him.

People who actually knew Jacob are very special to me. Many of these important to Jacob and important to me folks are there. As we walk alongside them and share snacks and conversation after the walk, I'm reminded of their relationship with him. The ones who brought him toys. The ones who babysat in the hospital. The one who played music and danced with him. The ones who kept us company in the surgical waiting room.

Jacob was no shrinking violet. Walking around with enormous signs with his name and favorite food emblazoned on them is quite appropriate. If he were shy, I feel like we'd have to represent him in a quieter way.

I'm not much into sports like baseball and football, but forming Team Jacob and doing something positive as a team feels natural. I am much better at raising funds to help kids with cancer than I am at pitching or tackling people.

Like many sporting events, there is a healthy and fun sense of competition between teams. But here, there is also a sense of everyone rooting for and supporting one another. Team Jacob, Team Sienna and Xander’s Orange Crush have different stories, but the same goal.

There is some sadness underpinning this event because let's face it: childhood cancer sucks. Even so, the walk is relentlessly upbeat. Jacob himself was like this a lot, even when things were hard. So while Disney may be the happiest place on earth to lots of people, I think that for me, the Hope & Heroes Walk easily fits that description.

Jacob is a beautiful name. Jeremy and I had it all picked out years before having children. I'm still very much parenting this child, in my own special way.

You will never be wrong in asking me about Jacob, sharing memories if you knew him and allowing me to bring him into conversation.  Jacob is the opposite of a taboo subject. So go ahead. Say his name. It's okay. Really!

Binders

There are important things going on in my life. Chances are, every important thing has a file to represent it, and a place in my filing cabinet.

If something is extremely important to me, I create a binder for it. Once a subject has a dedicated binder, it is in the upper echelon of stuff I am working on. It is a level above the materials I house in the filing cabinet. It is Binder Worthy.

Binder Worthy means that the subject would benefit from an intensive Staples office supply treatment.

I have plastic translucent folders in a fetching palette of spring colors. I have dividers for different categories. I have clear plastic pages for display. I have zippered pouches that fit into the binders for small miscellany. I have labels and Sharpies. The act of creating and maintaining a binder is not only useful, but an exceedingly enjoyable experience for me.

I remember the moment it all started. It was at a middle school fair held at my kids' elementary school. I organized the whole thing.

I arranged for some parents whose children were successfully placed in good middle schools to come and talk to families. One of the parents was a smart and organized dad who managed to handle the placement of boy/girl twins. In NYC. In public middle school.

During his presentation, the savvy dad showed us a middle school binder he made. I'll never forget what he said. He recommended making a binder and carrying it around at all times. The reason, he said, was that one never knows when a middle school related opportunity could spontaneously arise.

I was hanging on his every word, and by the next day, I'd started that binder. That's what kicked this whole thing off. Now I have several active binders.

One of my current favorites is my apartment renovation inspiration binder. The first thing I want to mention is that I love the outside of the binder. It’s black, with a white Apple computer sticker affixed to it. The Apple sticker was lying around our desk for a long time. No one ever stuck it to the computer. One day, I slapped it on the binder. It makes for a visually compelling graphic statement.

At first this binder was for Noah's IEP. If you know Noah at all, a binder with an Apple logo front and center is extremely appropriate. Unfortunately, IEP records and materials soon made a larger binder necessary. I re-purposed it once Jeremy and I started talking about the apartment renovation.

Every time I see something inspiring for my apartment reno, I tear it out and display it in the binder. It is sort of like an analog version of Pinterest. It does not have the same sharing capacity. That said, I showed it to my mother the other day. She said that now that she's looked at my binder, she will send me things to put in there if she sees anything good.

I have another binder devoted to creative inspiration. This is a broad category and can include anything from clippings of art I love, to quotes, to articles. It is important that the act of leafing through the binder be an uplifting and highly aesthetic experience.

The high school binder is very active. It has helped me place both kids in an appropriate medical school program that fits their interests and needs. Did I just say medical school program? Sorry! I meant to say New York City Public High School.

Having a different color-coded section for each school with notes, brochures, and copies of application materials gives me a peaceful feeling. Once I'd completed the process for Hannah, I repurposed the binder for Noah, with all different schools, but the same beautiful colors.

The IEP binder I have for Noah is something I started when he was in 5th grade. This is a serious binder. It functions somewhat differently than the other ones.

For those of you who don't know the parlance, IEP stands for Individualized Education Program. Noah is a very interesting person. Like many interesting people, his skill sets are somewhat uneven. Some of his difficulties were causing learning and other issues in school.

The 5th grade IEP binder contained private evaluations I had done from occupational and speech and language therapists as well as a child psychologist. I had every phone call with the school documented and filed in there. I had examples of Noah's work, handwriting samples and copies of report cards with plummeting grades.

The school psychologist had a hissy fit when our guidance counselor said that I wanted to get Noah an IEP. I'd heard this song and dance before. Noah is very smart. This particular school did not traditionally like giving IEPs to students who were above grade level for reading and math.

I saw where this was headed and I wasn't having it. I'd been called into an impromptu meeting with the school psychologist and guidance counselor. I took my binder and plunked it on the desk with an audible thud. We exchanged pleasantries. I smiled. I never raised my voice.

I've stopped working so I can focus on my son, I said. I have all the time in the world to pursue this IEP. This is my full time job now. This binder is full of private evaluations. This binder goes where I go. I'm available 24/7 to pursue what's right for this child to have the support he needs going into middle school.

I leaned over. My son has ADHD. His mother most certainly does not, I said.

I had that IEP in short order and Noah is now a successful 8th grader at a different school, with a smaller IEP binder and the support he needs.

The recipe binder is my eldest one. It lacks a certain finesse that the newer ones have. I'm thinking of some new ideas to make it more efficient and attractive. I'm in no hurry because it’s functioning well. As binders go, it could be a lot worse.

The 5th Grade Table

When my kids were in 4th and 5th grades, I would volunteer at their school for lunch and recess duty.

I worked alongside the two lunch aides and the Physical Education teacher. I helped the kids open their ketchup packets, started their oranges and got lots of napkins for the spills. I also walked around the cafeteria. I was an extra set of eyes.

Then at recess, I walked around again. During quieter times, I might use a variety of non-verbal skills like context and body language to try figure out what the aide and the gym teacher were talking about in Spanish. Then they would apologize and start speaking English again. I told them not to worry about it. I liked it.

I admired the school aide very much. She came to the United States as an eighteen year old, not knowing a word of English. By the time I met her she was fluent, with a very rich vocabulary. She learned by doggedly reading the dictionary every day.

When things got rough, or a kid was seriously out of control, she would send me to get security. I'm a fast runner, particularly when there's some adrenaline on board.

Sometimes specific and pervasive problems would surface. They would cycle in and out. There was one week when the 5th graders were having a behavior problem.

The kids were allowed to talk in polite volumes during lunch. But then when the aide or the gym teacher did the Signal - three claps - they were supposed to quiet down. But the kids kept talking and talking. The cafeteria staff were at their wits end.

Every once in a while, the principal would put in an appearance. This principal was not a yeller. She had a lot of equanimity.  The worst thing she would do or say when she came down there would be to compare the 5th graders unfavorably to the kindergartners. The little kids were apparently excellent at calming down as soon as they heard the Signal.

Then she would go back to the other building. The school was split in two, and her office was several blocks away. That is a very long story.

I could see what she meant. But to me, it was an unfair, like comparing apples and oranges. I don't think that kindergarteners want to converse as much as 5th graders do. 5th graders are getting ready to be adolescents. They have more of a social drive.

The school aides and the gym teacher came up with a plan. They gave the kids assigned seats for lunch. They made sure that best friends and cliques were separated. Normally, the boys still sat with the boys and the girls still sat with the girls. The staff did as much boy - girl alternating as they could. It was imperfect because for whatever reason, the girls always outnumbered the boys at this school.

My daughter and her best friend approached me to say that this new system was unfair. They felt that a grave injustice had been committed against them personally because they always quieted down when they heard the Signal.

This is true. But I told them that they needed to listen to the Lunch Teachers. I was trying to cultivate the idea that not everything could be fair when you are in school. Sometimes you have to go along to get along.

On the first day of the new system, the 5th grade table was very quiet. The kids, bereft of their friends and social ties, were extremely well behaved.  They were quiet even before the Signal. The experiment went so well, that the aides mixed things up socially again the next day.

What they weren't counting on was the adaptability of children. The children would have liked to sit with their friends. If given the choice, they would never be sitting in these seats, next to these people.

But this is where they were sitting. They accepted their lot. If they couldn't sit with their friends, so be it. Once they got over the shock of the first day, they made the best of it.

They spoke indiscriminately to whoever was sitting next to them. On the second day of lunch the table was just as noisy as it was previously because the children became conversationally promiscuous.  They ignored the Signal in favor of their interesting new partner.

It might have been stretching it to think that they made new friends. But they could sit quietly or they could converse with their neighbor. They chose to talk to whoever was sitting there.

It reminded me a lot of this song that I liked in the 1970’s. It went like this: If you can't be with the one you love, then love the one you're with. Of course, the song was about something else. But you get the idea.