Unsanitary

Once our son’s pediatric oncology nurse teaches us how to wash our hands, we will never again use the melted and misshapen bar of soap in the clammy puddle of cloudy water. We will cringe at the sight of the limp, damp, terry cloth hand towel provided in other people’s bathrooms. 

Our child died. It wasn’t from opportunistic infections or carelessness. It was from cancer. All of the germ fighting things we did for him so that he could sustain the strong treatments we hoped would save his life remain with me. There were times when he had zero white blood cells. He still died but at least we controlled the things we could. His death is 100 percent, but my regrets around him are zero. 

So when a pandemic hits, it’s like riding a bike.

While other people are still moving in slow motion, I leave my old life behind without looking back. Everyone is immunocompromised when it comes to COVID-19. The implications are massive and unwieldy.

Soon my hands develop eczema from all of the washing. This too, is familiar. I take the recommendations of epidemiologists and  then embellish them all  for good measure. My doorknobs gleam. 

I don’t game the rules, finding a little loophole here or there. 

Before my child developed pediatric cancer, I was just like the rest of you. I call other parents, unscarred by chemotherapy regimens or pint-sized caskets, civilians. 

Civilians live in a place I can observe but not access. You do not have flashbacks of the moment your child died. You do not have what psychologists call intrusive thoughts that come uninvited, superimpose that death onto surviving family members in crystal-clear details that can only be described as hyperrealism.

Make no mistake. I have no desire to edify or initiate you. I don’t want you wearing my shoes or walking in them. I want you cosseted in innocence because the alternative is just too tragic.

But this pandemic is a beast of unnatural proportions. Would it hurt you to be a little more careful, watchful, aware? Of the children you’ve been gifted? Or, while you are at it, yourselves? 

From the archives:

Before, then, wide open

Rending

The sun it did rise again

I Did The Math

It was summer. We were in the dining area of my apartment. Jeremy was at work. I was giving my children breakfast.

Hannah was a curly haired three and a half year old. Noah was almost 18 months and seated in his high chair. Jacob was dead, but I always knew how old he was. Five and a half.

I was coaxing food into Hannah while trying to keep up with Noah's appetite. This was hard. He could feed himself but sometimes became frustrated because he was so hungry. I helped him with that.

A random idea popped into my head. This is nothing unusual. I ran with it at the same time I continued the breakfast activities.

Previously, I seemed to exist on two different planes with my children. One was that their childhood stretched long and expansive for as long as the eye could see. The time that they would not be children anymore was too distant and abstract to contemplate. 

Also small children keep you very busy, so maybe I didn't have the bandwidth.

This stood in stark contrast to another scenario. That story involved one or both of the children dying, Jeremy dying or myself dying. There was not a day that went by without my being fearful of one nuclear family member or another dying. When I wasn't experiencing my children's childhood as infinite in its scope, I was thinking of it being cut down by tragedy.

Sometimes one of us got sick. Sometimes one or more of us needed a check up.

Going to the pediatrician and the internist helped. It  took a number of sick visits and well visits and sick visits that were actually well visits and well visits that turned out to be sick visits for me to stop thinking about tragedy all of the time. 

That morning for whatever reason, a third line of thought emerged,

It is commonly understood that typical children live with you full time until they go to college. They go away to college then they are back and forth for a while. Then eventually they live on their own full time. 

This can unfold differently. Some kids live with you longer. Some kids live with you while they  go to college. Sometimes something not exactly tragic but unexpected unfolds where the usual course of things gets delayed. 

There are a lot of possibilities. But for the sake of simplicity, I really focused on the high school, college, then independence story, taking place more or less chronologically and in a classic fashion.

That's where the numbers came in. 

I am a person who claims to be bad at math. It is true that I am not good at math. But there are times when math and numbers are my friends. This was one of those times.

It is difficult to figure out exactly where childhood ends and adulthood begins. It's more of a gradual thing. However, for my calculations I decided to round it off to age 20.

Using this method, I added up the years I would be involved in intensive mothering. I started in 1996 because that is when I became pregnant with Jacob. Even as a fetus, he was under my care and he made himself known at that time.

Noah, my youngest would be 20 in 2020. 24 years of my life would be spent in the high involvement parenting stage of life.

I began my parenting journey at age 33. When Noah reached 20, I would be 57 years old.

Using math to further advantage I then figured that the  average lifespan for a woman who was not felled in her prime by tragic circumstances was around 80 years old.

This was significant.

What this math showed me was that statistically speaking, I would have at least as many, if not more years relating to my children after they reached adulthood than I would while they were children.

As I finished the breakfast part of the day and commenced the bathroom negotiations with Hannah and the diaper changing of Noah, I gave this matter some further thought. 

My first response was that of poignance and a bit of shock. Childhood was finite.

Moving on from something I couldn't and shouldn't  do anything about - growth and the clock and maturity being good things - my thinking went to a different area.

That area was of Hannah and Noah as adult children. 

Doing my math seemed to open the floodgates of opportunity. I imagined going on adult family outings, where we would meet at some agreed upon place - Tuscany? Santa Fe?

I imagined Hannah having a baby someday and me visiting  to help her. Maybe she would live close by and I could go back and forth. But  I did see myself getting on a plane close to her due date.

Mixed with graduations, grandchildren and trips were more everyday moments. Brunch. Babysitting. Watching TV.

Because this period of time with my children as adults had the potential to be long and important, I figured some advanced planning was in order.

In a nutshell, my children were required to have a relationship with me now. I was their mother. They depended on me. However, there would come a time when this was no longer true. 

If I wanted to be the kind of mother whose adult children and their significant others wanted to have brunch with, then I'd best be thinking of that now.

I was already gobbling up parenting books, parenting magazines and parenting resources. I was reading to my children. I was not practicing corporal punishment. I was speaking with them in respectful tones - most of the time.

Imagining the children as adults lent a little more pizazz to what I was already doing. Asking them questions about themselves, being patient and open and helping them see me as a person they could trust was something that was feeding a relationship that would hopefully last a long time.

If I wanted to be in my adult child's inner circle during a crises, then I'd better remain calm during their emergencies now.

If I wanted them to confide in me, then I should give them my full attention when they spoke to me now. However halting, however garbled, however repetitive.

If I wanted them to talk with me when they were older, then being judge-y with them now would be a mistake.

If I didn't want to become one of those cliched, terrible mother in laws, then I should choose my battles and not nit pick the mismatched clothes or the Spiderman costume my son wanted to wear.

If I wanted to be a mother who could remember what it was like to be 25, then I should dig deep and think about how I felt as a preschooler, even if I could only remember a little.

There are fleeting thoughts that last a moment and then they are gone. This thinking never stopped once it got started.

In retrospect, I've recognized how important that random thinking on that ordinary day was. 

For one thing, the train of thought and the math I did was beyond the present. I'd been mostly living one day at a time. The forward motion of my thoughts had hope for the future. I was making slow progress beyond the black and white tragedy vs. fairytale thinking. 

The adding up, the numbers, the making sense of them meant that I wouldn't be blindsided. I wouldn't wake up one day at age 50 and say holy shit! I have adolescents! This gig is almost over!

Or worse, bemoan the milestones and become a major drag remembering the simpler times when really I should be appreciative of every age and stage. I wouldn't be the sad sack sniffling at the birthday party.

Eventually, I started thinking more deeply about the quality of my relationships with my adult children. There are no guarantees. But there are plans we can make anyway.

One of my goals is to not just be a 70 year old with adult children but a healthy and vital one. I don't picture marathons. But I do imagine getting down on the rug to play with small children and then getting up again. I imagine hikes. I imagine a jaunty step through airports and a sharp mind.

If I get cancer or some other disease I want to be able to take it on.

So when it's hard to resist a second slice of cake or do the yoga or jogging I think about it. Then I think about it some more. 

There's this saying. I thought it was interesting the first time I heard it but by now 'm kind of sick of it. The days are long, the years are short. The days can be long, God knows. Some of them have been real doozies.

For me the days are long and the years are long. I mean that in the best possible way. 

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Now I Understand

When I was a young woman, a new college graduate and first living in NYC, I learned of some people who had survived the Holocaust. I don't remember who they were. They may have been some older, distant relatives of Jeremy's. They may have been the grandparents of friends of friends. I never met these people. But I heard about them.

One holocaust survivor was a woman. The other one was a man. I don't remember if they were married or two separate, totally unrelated people. It doesn't matter.

After the holocaust both people came to live in the United States. They assimilated and for the most part, lived normal lives. However, the woman never went anywhere without a can of tuna and a can opener.

The man could go out without food. However, he had amassed a stockpile of guns that he kept in his basement. If Jews were going to be rounded up again, he was going to be ready.

I couldn't pretend to understand what these people endured. I was out of my depth even thinking about it.

I felt sorry that the people who survived the Holocaust were not able to feel safe once they were living in the United States. It was difficult for me to understand why. The evidence for feeling safe seemed obvious to me. But I had enough perspective to know my limitations. In other words, I could understand why I couldn't understand why.

A level of understanding would come years later with the death of my son Jacob.

I can't liken what happened to me, to Jeremy and to Jacob to the holocaust. The two are not the same. Even the word overlap feels like too much comparison.

But when my son Jacob died, it was the worst thing that ever happened to me. It's the worst thing that could have happened in the context of my particular life.

Right after Jacob died, I said to myself that I had just experienced my quota for bad news. I took some measure of comfort from this realization. That good feeling lasted for approximately 10 minutes.

Then I realized this entire construct was wrong. The very idea of a quota implied that there was a sense of fairness and order. There weren't any of these things. No one was organizing this and deciding that I had my lifetime limit of bad news. This was random. There was no rhyme or reason to it at all.

I can't walk in the Holocaust survivors’s shoes. They can't walk in mine.

One person stockpiled guns. Another carried tuna. I became watchful. I already had another baby when Jacob died. I would go on to have one more. I want to watch them grow up. All parents worry about something terrible happening to their children. For me, it's just a lot easier to imagine. I have a clear point of reference.  Hyper-vigilance was the price I paid for the gift of these children.

Jeremy was not as afraid about the same things I was. But he had his triggers. The good news was that our triggers were usually different. That way one of us could help the other one.

When bad things happen, everyone changes. No one gets off easy. There are people who emerge from trauma with their worldview somewhat intact. There are people who feel that lightning can strike twice. Like just about everything, people can be mostly one way or the other, or a mix.

Every time I explain this, it feels clunky. I'll try anyway. 

For me, Jeremy, the lady, and the man, bad things happening showed us what was possible in terms of bad. Bad things happened and none of us had any illusions going forward. The bad things that already happened opened the floodgates of bad possibilities.

I'm talking like it’s only the four of us like this. I don't like to think there's more, but that doesn't make any sense. There's hundreds of thousands of people walking around having experienced the aftermath of trauma.

If you're one of these people carrying around your own version of tuna and a can opener, know that other people get it. I get it. That's a small thing, but it's something. I can't speak for the woman or the man, but I can speak for me. Time, living, and experiencing good things eventually impart a new perspective. I'm proof that it can get better.