Wednesday, June 25, 2014

A long night, long ago

It was six years ago, right about now, when we took turns sleeping and trying, and failing, to soothe our sweet Boy, as we smelled him, smelling not right to us anymore.

He was 22 pounds at nearly 10 months old, and 2 pounds of that was tumor.

To be removed the next morning, as we waited. And waited. Me diligently hooked up to my Medela Pump-In-Style every few hours.

Our wedding anniversary is in 2 days. It will be ten years for that, but one countdown forever intertwines with the other.

We are forever changed. We are lucky. We are scarred, and scared, relieved and yet still on our guard.

I remember looking at his abdomen after the surgery and thinking, he'll never be the same. And that was only one scar.

More scars have faded, except for one of his port scars did the keloid thing and is still puffy. From far away you can't tell, and from close up nobody else cares.

Ten years ago on Friday, we thought we had everything all figured out.

Six years ago today was when we were first told that our baby had cancer.

Today our lives are delightfully simple, but nowhere near what we thought they'd be.

Most importantly, we are together, all five of us now, and we are stronger.

Saturday, February 8, 2014

Review of Procedure for the ridiculous

Mom and I are in the process of helping a family whose infant son is undergoing treatment for neuroblastoma. It's a different course of treatment but still calls to mind our experiences. It puts us back in that mode, but by the same token it doesn't, because we are (B"H) viewing his situation through hindsight.

Today we gave his grandmother a foam floor mat. This is the reason why:

Toddlers like to play on the floor. Toddlers with cancer (I cringe to even have to say it) are susceptible to germs but have little understanding or respect for the concept, but a set of floor mats are perfect. Also, it creates a sort of "clean zone" for the little one. Not to mention, this mat has numbers and our friend has letters, so there's the education value. And don't knock it--without ever having to use a single flash card (except when he decided he wanted to play 52 flashcard pickup), The Boy took to letters and numbers at a very young age. He spent so much time in the hospital with not much else to do. 

We are so blessed and so thankful for the good health of our children, and we pray for this other little boy every day and every week. I don't want to give out any identifying information about him without the consent of his family but you need to know that there are still children, every day and every week, being diagnosed with cancer. Some, like this boy and like my Boy, were 10 months old at diagnosis.

Saturday, February 1, 2014

Thank you for being a friend...

What happens when a person has many friends, so many people who speak kindly of her, so much positive recognition within her community...and it is insufficient?

What happens when the treatment becomes worse than the disease and instead of being a balancing force, it pushes her over the edge?

I know the answer. You know the answer. It isn't pretty.

Accompany the dead for burial. Comfort the mourners. Those aren't just nice things to do; they are commandments. So I do those acts. I sing for them. I hear their names. But the whole situation is awkward because no one wants to talk about the real problem.

The following remedies are socially acceptable: medication. Therapy sessions, but only if you can afford them.

The following remedies are not socially acceptable, and requests for such remedies are frequently followed by some form of "pull yourself together" "cheer up!" or "back in my day there was no such thing as 'mental health days.'": Taking time for oneself. Reaching out to people, in person, even at odd hours, if you're not on their list of acceptable companions. Taking days off from work for emotional and mental recovery, if you cannot afford to do so.

I'm guilty of this: I talk about my friend and how great she was and I find myself thinking, if I had reached out to her, she'd have thought it strange, because we weren't that close. If I'd had any clue that she was struggling like this, even as I saw her successful personal endeavors through social media, I don't know what I could have done. I maintained a positive image of this superstar woman who deserved nothing but happiness, this wonderful and talented woman whom I had known since we were children. But I'm guilty of dismissing my own power as a friend and source of comfort.

Emotional displays never came easily to me. That's my husband's job--he can feel all the feelings and I can be stoic and insensitive. Logical, rational. Helpful skill to have in order to keep the ship running, but probably what stunted my abilities as a singer and made me uninteresting to watch as a performer. No one cared what I sounded like because, when I was younger, I had nothing to say. I am rediscovering myself through surprising new idioms and embracing the emotional aspects of singing, for work and for fun, and even the ability to evoke emotion in other people.

I don't know where to go from here. I don't know that I've sufficiently learned the lesson of how to be a good friend because I stay stuck in my world with my own family--my husband and children, as well as my parents who still care for me unconditionally. And I try to return the favor. It's hard because I do call people, and they don't call me back. Or they do call but they're too busy.

I don't miss the companionship of one person or another until it's too late.

I wish it were never too late.

Saturday, November 30, 2013

Thanksgivukkah reflection

It is at this time of year that I reflect upon the dramatic turns taken in my life, because it was four years ago on this holiday that we made our big move. This was a geographic move and, as it turned out, a career move.

If you know my husband, you know that he is a great educator and a great music director. He has a certain sort of charisma that cannot be taught. And when he was a band director, he was completely invested in his work and it seemed both effortless and joyful. I knew better because as a music educator myself I know the process and I saw the work that he did. It was everything he knew and everything he thought he should be, to be in front of groups and create musical cultures. He was really, really good.

He doesn't do that anymore. 

I've been trying to do what I did, before the move. Before cancer. And I may not be doing that anymore either. 

The job that I was doing, while it exists for now, doesn't seem to be available to me. There's a connection I'm missing. I don't know the right people, even though I thought for sure that I did. I have to accept that there may not be a place for me as a teacher of orchestra or any other music, in a full-time professional capacity. Maybe I'm just not supposed to be in that spot right now. 

Four years ago there were two children--the sick toddler and the raging infant. Now, there are three. The Boy, wise and wonderful warrior survivor; The Bear, the intense and energetic preschooler who was given a chance to be something other than a piece of luggage at doctor and other therapy appointments; and the toddler who is his own sweet person and yet, I get these glimpses of what The Boy might have been like had cancer not stolen toddlerhood from him. 

But where I am is working for me. I have taken on part-time religious work, both teaching classes and singing for services, and I am expanding my capabilities in every direction through this work. I am so motivated and excited about it. The teaching is okay but the singing and prayer work for the kids is great fun. And singing for the main services is fulfilling personally and musically. The pianist/organist/music director is such a fine musician, and communication is so easy. 

Considering my lukewarm attitude toward religion growing up, it is surprising that I have become so embedded in the culture of a temple. 

I was meant to be where I am right now. 

Monday, March 18, 2013

3 year all clear!

The Boy had his abdominal ultrasound and semi-annual bloodwork, and everything looks good! We remain NED!

Sunday, December 23, 2012

Our country. Our world.

We live in a country where literacy, even just functional, is a developmental milestone attainable by a majority of the population and not merely the province of a learned elite.

We live in a world where, while true research requires a large amount of time, just about any answer to any problem or question can be found by typing a phrase into a search engine.

We live in a time where we know more about medicine than ever before, and we strive to keep people living longer and better instead of accepting everything as a death sentence.

We live in an age where we know more about child development, pedagogical process, and mental health than we ever could have imagined.

A world of instant feedback.

A global society where we can communicate with everyone easily.

A country where, despite disparities, every child is entitled to a secondary level education.

Indoor plumbing is expected!

We are rich. Many people own cars. Many people are able to live in big beautiful homes far beyond the boundaries of public transit routes. Commuting to our places of employment is such a luxury that it is seen as an annoyance.

At the touch of a button on our phones, we can create a pretty high quality photographic or videographic record of our daily lives.

We have everything so big and so grand around here that we have the good fortune to get mired in the minutia.

Look around next time we go to vote. People who are black and white and everything in between, male and female, property owner and tenant, all vote here.

Notice the different types of life choices available to us. Perhaps we get overwhelmed at the prospect, but we can make decisions about how to dress, what kind of jobs to do, how to care for our families, and who takes on what roles. Our lot in life is not completely predetermined by our families, our genders, or even our financial situation. I'm not looking to discount the adversity that many people still face in trying to live their lives, but it's a different world, and we make progress every day.

This is not our founding fathers' country anymore. It is greater beyond their wildest dreams.

Saturday, December 8, 2012

You have too much stuff

Today's good deed required that I do some sorting and weeding out.

If you are so inclined, do so. Then get rid of things that you don't use. Give them away--someone probably can use it and if you give to an organization, it is often tax-deductible. You know you have too much stuff anyway and you never use half of it.