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

Five Minutes

This is the worst thing that's ever going to happen to me. I sit with that knowledge for a while.

I'm 36 years old and this is my one cross to bear. Everybody gets a tragedy.

If I survive this, I will not be waiting for the other shoe to drop. There is no other shoe.

I feel a measure of what seems a little like comfort. I hold on. I can just about do this. This is what passes for okay news now.

Except that it takes me almost no time to realize that the floor underneath me is fake.

There is no one in charge here. There is no one doling out trouble, one per person, one at a time, only what that person can handle.

There is no universe that owes me a damn thing. Shit is random. Nobody is organizing it. Nobody is making sure anything is fair.

Years later, this is still my greatest tragedy but I'm no stranger to bad news. I'm that person who walks into eyes of hurricanes. I don't look away. I'd do that for you. You wouldn't even have to ask.

Not everything is bad. Some people died. Others survived. The survivors are here with me now. They turn up at the most opportune times. They say wise things. The kindness of other people!

I laugh so hard I almost forget to breathe. I see beauty in rubbish and sidewalk cracks.

With everything bitter there is some sweet. I still don't know what's going to happen, though.

Bring it on, I say to all of it.


From the archives:
Hospital Corridor 
All of the roads they did lead here
The very second you lost me

Command Center

The table was long, sleek, black and low to the ground. It evoked mid-century optimism by way of IM Pei. Like half the stuff in my own apartment, it was from Ikea. The table was a mess.

Do you mind if I rationalize this table for you? I picked up the expression from my mother-in-law. First her daughters started using it, then it spread to me. It was perfect for the situation at hand.

Sure, he said.

First, I cleared the items from the table. I placed everything on the floor. I then used the all purpose spray I found under the sink and some paper towels I brought over that day.

I went over it a few times until I was satisfied with its matte, clean surface. My handiwork also created a reassuring and invigorating aroma.

I then sat cross legged on the floor doing one of my favorite things. I commenced putting like with like.

I started with the meds. All of the pill bottles went together. Then I dealt with the medicinal and topical creams.

I checked in with him to see if he was due to take anything. He forgot to take one of the meds, so I brought over some water and he did that. I made a mental note that he wasn't great at keeping track of this stuff and needed ample reminders.

Business cards were next. I put them all  together, making a private plan to enter the doctor and social worker information into my own phone, surreptitiously, while he was napping. You never know when I might be here flying by the seat of my pants, needing to call one of these professionals on his behalf.

Receipts were arranged in a neat pile.

All of the obvious trash went into a small plastic bag I brought over so I didn't have to get up and down. I gathered the empty Gatorade bottles for recycling.

I put all of the tiny wind up sculptures, the ballpoint pens and post-it note pads together. That was easy.

He had quite a pile of unread New Yorkers and alumni magazines. New Yorker with New Yorker, alumni magazines with alumni magazines. Would he read any of them? I knew better than to ask. We had a silent, tacit agreement that we hoped so.

A lot of his people were sending letters, cards and gifts. I put those together in a sensical fashion.

Now it was time to deal with the marijuana.

There was a pipe or two. Obviously those went together. I gathered up the tiny ziploc bags of smokable weed. I put the stuff together that was meant to be steeped in tea form and drank. There was a viscous liquid in a plastic container with a lid that he said was disgusting but he didn't want discarded. There were these small cubes that you're supposed to eat. People sent him those from places where marijuana was legal.

Everything was sorted into lovely neat piles. The table was clear, clean and waiting. It was time for the finale.

I brought everything from the floor to the table. I arranged the grouped items in a way that had an intrinsic sense of order, paired with a welcoming artistry along a bit of whimsy thrown in.

This scene was repeated again and again on subsequent visits. The activity had little variation in days to come. Sometimes objects joined the group and needed sorting. Someone else took the receipts and filed them elsewhere.

Some items were rendered useless by later circumstances. Some things became more important and were brought closer to him once he started spending more time in the bedroom.

Table management kept me moored. Sometimes he sat with me and chatted. Sometimes he went into another room, at my suggestion, to have private space for an important call. He might be sleeping. Only once did he leave the apartment.

It went on like this, week after week, then day after day until things shifted irretrievably and the table no longer became central for him. After the unthinkable happened, it became moot. Finally, the table left the premises. It was either gifted to someone, or donated. I don't remember which.


From the archives:
The very second you lost me
What I know, what I don't know 
Lying In Wait

Time, As Few Of Us Know It

Kids grow up so fast. In the blink of an eye.

The days are long, the years are short. And so on.

Blah, blah.

Kids grow up so fast except when they don't.

And when they don't, the years are pretty damn long.

Truisms are truisms, but not for everybody.


From the archives:
The Best Thing Somebody Never Said To Me

Off-White

So Long 

I'm not going anywhere

I made sure to look decent whenever I went over to see him. It was a dire situation. He didn't need me showing up there looking like hell warmed over. Besides, I didn't want him to know how worried I was.

I'd gone over for several days in a row. It was decided that I should take a day off. A friend of mine suggested it. I ran with it.

So the next day I woke up with the knowledge that I was not going to leave the house. I wasn't going over to his house or anyone else's. I had no appointments. I wasn't expected at either of my kids' schools. The farthest I'd be walking would be to the laundry room.

The thing I remember most  about that day was getting dressed. The clothes selected themselves.

I put on my Camp Sunshine sweatpants. The elastic was shot, but they still stayed up. The Camp Sunshine logo was almost worn away. It looked like peeling paint.

I topped it off with a long sleeved, ultramarine blue tee shirt. The design looks slightly Buddhist. It's fancy font invites you to Imagine A World Without Cancer.

It turns out the shirt, acquired on account of being a Cancer mom, and unfortunately, also a bereaved mom, was  somewhat applicable to my current predicament. Because of fucking cancer.

The pants too, but less directly.

Finally, I rounded off my statement with thick green socks with treads at the bottoms. These are hospital socks. They gave them to me at the UrgentCare center when I broke my ankle. They stretched one over my splinted foot to prepare for my trip home. I put the other one in my bag.

The best thing about the clothes and socks were their comfort. I was clearly engaging in what lifestyle blogs call extreme self care. Not facial masks, cleanses or a spa. My version of it.

The second best thing about the three elements were that they are all on a list of items that I am only allowed to wear around the house. I used to wear these things out in public. Since that time, I have raised my standards considerably.

It was appealing to wear a tee shirt at home that I could never wear to visit him. He could no longer imagine a world without cancer. It would be pointless to try. It would be a terrible idea to wear it in front of him. Besides, as I've indicated earlier, it isn't even flattering.

But I was free to imagine a world without cancer in my own home.

I luxuriated in looking bad but feeling good. Sometimes I caught sight of myself in a mirror. The worse I looked the better I liked it.

I don't remember much else about that day. It was not a watershed day in terms of accomplishment. I have some positive memories about it, even as the details blur.

Right after that, things took a terrible turn. There were emergency trips to see him. There were emergency phone calls to help him.

Laundry was the last thing on my mind. One of the last times I went, but not the very last time, I broke down and wore the Camp Sunshine pants. Most of my other clothes were dirty.

Another friend was there visiting with me. Sweatpants, he said. It was without judgement. It was a statement of fact. For him, this was an unexpected development. Yes, I said.

When I bought the Camp Sunshine pants, I believed that I would never throw them out. But not long after he died, I brought them to fabric recycling. They developed holes. They no longer stayed up. I was okay with it. Especially under the circumstances.

I'm not ready to write much about him yet. I'm not even prepared to write about his clothes. Writing about my own clothes is about the best I can do.



Read more:
The Best Thing Someone Never Said To Me
What I know, what I don't know
Lying In Wait 

This Shit Got Real

You're sitting on the floor packing personal effects. You arrived early and let the place really hit you. It's nobody's home anymore. Every time you come it's a little less welcoming.

You're using paper and bubble wrap to pack every delicate and fragile thing this man had.  You make cushions at the bottom of the boxes with the materials  that you carried here last time. You're careful because you need to get this done today. You don't want to run out of resources.

You want to cry. But you're afraid once you get started you won't be able to modulate that activity. Like you said before, you need to get the job done. You said you were going to and you keep your word.

If you get all emotional then there are consequences for that. The other friend, the one plowing through different personal effects in the other room, would be uncomfortable. Then again, he seems pretty settled in there. You might be able to get away with a few tears without him even knowing.

If you just soldier on and procrastinate your feelings you'll be purposeful and sharp. But you worry about what will happen later, after you leave. You haven't been sleeping much. You've amassed a debt and it has to go somewhere. Three o'clock in the morning is where it's been going.

You admire the other friend, but you are not him. You'd like to stay you, only that person is a bit fuzzy right now. 

You're good with the packing and wrapping and sealing and labeling. You feel your competence with that. 

But you still get all self-critical and snippy. You don't know what you're doing. You can't fall apart here but you don't want to pay the piper later either.

You remember this. You're not supposed to know what you're doing. You've been winging it all along, even at the beginning when you thought you knew what to do but then found out later you'd be flying by the seat of your pants.

No one has taken you in hand. No one has mentored or schooled you in how to do this. You're doing the best you can. Same with the guy in the other room.

You're softer now. You're going to have to accommodate you. You stay in this nether world. You're not a robot but you're not letting the crying be the boss either.

After three boxes you take a break. This man's people are emailing you. You're aware that you are not a bottomless well of empathy and good will. You've dug deep with these people and just for today, they're getting a little less of you. You've got no patience for any one sided crap this morning.

You send out serviceable communication. You try it on for size. You like it.

You spend more time and more adjectives on the cousin. She's feeding you a little bit with her turn of phrase, her sparkling way with words. You smile and write something short yet pretty. She responds in kind.

You parcel you out in smaller pieces leaving little bits left over. The little bits amass. You get your job done. You did what you said you would and then some. 

The other friend chooses something made of glass and you pack it  for him. Your hands are  confident from a day of this. You've wanted to help him somehow and you just found your niche.

The shit's real but you're okay. For the first time since this all began, including the days at the beginning when you thought it would all work out, you shake a little of it off when you leave. 

You exit the train. There's a young orthodox Jewish couple who have moved to your neighborhood. They're walking together pushing a baby in a carriage. 

You feel like they are renegades because they settled in Inwood, and not Riverdale, Crown Heights or Monsey. They are devout but willing to mix. People who are complicated and seemingly contradictory fascinate you. Same with people who make their own rules.

You love the couple immediately then realize you're being silly and reign yourself in. One of your long-time neighbors has noticed the baby and is exclaiming and cooing at her. In spite of her relative immodesty, the couple is friendly and engaging with the the not-Jewish neighbor.

You get closer and now it's your turn  to have a look. Your dress hits below the knee, but your arms are exposed. No matter. You and the other neighbor are collaborating now. Look at those eyes! That smile! The baby looks from one of you to the other. 

Light, lilting and merry, you remember the fun part of your repertoire, and it doesn't need to be orchestrated by you. You are not responsible for everything. You allow yourself to get swept up and to fall in love with the baby and maybe even the rest of the day.

Congratulations, you say out loud to the couple and then silently to yourself. You walk down your block toward your building and your apartment. The evening stretches out, wide and possible. Even better, it belongs to you.

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July 1999
A Stressor Is A Stressor Is A Stressor

Check Back With Me Later.

You ask - I ask myself.

I can't answer.

Jesus Christ! I wish I knew.

It's not steady ground, so don't ask again. 

The plans I make are small.

I'll look back on this.

That I know from what's happened before.

It's a story that gets told backwards.

There's nothing to share now.

It's too damned soon.

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Lying In Wait

So Long

It seemed like maybe this wasn't goodbye. Then of course, it was.

I had all kinds of words to say to myself. The experience will live on. There's a part of this that doesn't die. Things will go on in a different form. You're always with me.

The fact remains. I can't talk with you anymore. That's a tough pill to swallow.

So I told myself that this is the beginning. I know it's ended now. There's no more of this to come back to.

Every day is going to get easier. Now I've hit bottom. Once bottom is achieved there is nowhere to go but up. 

I sat with that for a few minutes. It sounded good. Unfortunately none of it is true.

Things will look up. Then they will plummet down again. There might be a gradual upward course, but it won't be a straight line. There will be ebbs and flows and unexpected turns. It will move from side to side.

Good - crappy - better - okay - crappy - good - great- good - okay. And so on.

I had to sit down for a few minutes. Then I proceeded to adjust to this trajectory.

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Nothing

Grace

What I know, what I don't know

It’s a shift.

I know without a doubt. This corridor is narrow.  It’s unmistakable.

There's no argue, no negotiate. You don't work it out with what is. 

After a time, a minute, maybe an hour, there's a small bit of wiggle room. 

I realize I know what. What is what I've been talking about.

What I don't know is where and most importantly when. 

Knowing what I don't know makes it sort of okay.

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Grace

The Best Thing Someone Never Said to Me.

Crisis Sidestepped And Averted

I'm at the pediatrician's office with my teenager. She's been complaining about something for a few days. She's had no response to the mild OTC interventions we've tried. I'm concerned but not alarmed. 

The doctor seeing her today is not her primary, but a familiar member of the practice. He's kind and smart. 

The bright young pediatrician is full of vigor and calmly focused in spite of this visit being late on a Friday afternoon. He is also perplexed.

His brow is furrowed. My daughter's symptoms and presentation are not fitting neatly into a box. I recognize this phenomenon immediately. 

My teen is having a comfortable exchange. I go back and forth with a series of questions to attempt to break through the flummox. The doctor is giving me non verbal signs of his uncertainty without sharing his process.

Her primary is different. She and I are partnered up and a well oiled machine. She gives a lot of information. She narrates her line of thinking. She goes three steps ahead without my asking. She goes to the worst case scenarios, none of which are ever terrible. 

She treats me as a colleague. 

This doctor answers my direct questions. Her heart sounds fine. Her lungs sound fine. 

The meds we were giving her are apparently a joke. We gave them to her because we knew it would never hurt her I said. We laugh.

He gives us a line of treatment. This treatment would also serve as a diagnosis. When you give this medication, something different and  stronger than the one we were using before, you should see some improvement after three days. The medication working would serve as a reasonable diagnosis even though some of her symptoms point to this and some don't.

If we see no improvement after three days, we should bring her back.

My daughter seems fine. She's gathering her things and getting ready to leave. She's comfortable with what the doctor has said. She can deal with taking a pill twice a day.

An emergency is brewing. This one is mine.

I recognize the signs, less frequent than they used to be, but unmistakable. I'm feeling lightheaded and standing now would be inadvisable. A sense of unreality has crept in and is gaining momentum.  I am out of my depth.

I am clear headed and quick in a crisis, including my own.

I have not studied method acting, but know its basic principle. I tap into the part of me that remembers being competent  and calm. 

In a performance worthy of Meryl Streep, I smile at my daughter and the doctor. I ask her to meet me in the waiting room because I have a private matter to discuss with the doctor. It's about her brother.

She's used to this. Sometimes I actually need to discuss her younger brother, who is healthy but larger than life. But sometimes, it's something else. This is one of her primary doctor's favorite methods. It gives the two of us a chance to talk about the child privately.

The door closes. I lied, I say. I know, he says.

I come clean.

I'm having a panic attack and some PTSD. I say. If I don't have this conversation with you now, I'm going to pass out. I don't want any of this happening in front of my daughter.

He sits down. I have his full attention.

My eldest child  died. I say. He had a rare form of pediatric cancer. It is nothing like what we are experiencing here. The presentation was completely different.

The doctor is surprised and sympathetic. I see his demeanor shift. He's starting to straighten up. He's taking charge.

As a result of this trauma, I say, ambiguity is sometimes an issue with me. That's why we need this additional conversation. 

I have delivered my one minute elevator speech honed by years of taking care of children in the wake of what happened to Jacob.

The doctor nods. 

Do kids have heart attacks? I ask. Is she going to need to see a cardiologist?

He is definite. No. There is no heart attack happening. There is no cardiac concern.

I'm glad you said something he said. It's probably in the chart but I apologize that I didn't look. 

That's no problem I say. I mean it. I spent 40 minutes watching this doctor rush from one exam room to the next. Most of the kids were screaming. 

Thank you for taking the time. I say. I'm honored to do it, he says. He means it.

I feel the blood rushing back to my face. I know I'm pinking up. The conversation turns ordinary.

This child feels everything intensely I say. Sometimes things clear up on their own and we never really know what they are. She reports things other kids wouldn't necessarily notice.

Chances are, when she feels she is being addressed, her symptoms will improve, I say. She'll take some of the meds and frankly it will most likely work. 

The doctor feels this is a reasonable assessment. He reiterates that he feels there is nothing critical or urgent happening with my child. He also mentions that he is on call this weekend if I want her seen again or need to talk on the phone.

I know what is going to happen after I leave. Even though he's had a busy day - exhausting really - he'll phone our primary or the senior member of the practice. He'll run it by them. 

The next time I see him, he will remember me and my story. He'll anticipate that I may have extra questions. Since he seems to be a fast learner, he may even fill in the blanks when I haven't asked.  He'll be extra careful even when he doesn't need to, and I'll appreciate the effort.

I may have  gained a new colleague. It's okay if he's not. Not every doctor needs to be a hero as long as some of them are.

In a In a couple of days  there will continue to be something in the situation that is more grey than black and white. She'll be improved but not all the way. There will be  will be  a lot rolling around in my hopper.

I'll I remember every single mom from my support groups. Most of the moms in this group had kids who died from cancer. But one of them had an issue that initially presented with something like this only more severe, It congenital and uncommon. The kid kid died stunningly fast. 

I'll think about this. As a concern it won't take on its own life. My daughter wwill be hearty, bright eyed and not exhausted. She'll be too energetic and wholly herself to have this problem. Just like today.

Some things need some extra days to truly show themselves. They take on clarity with time and the only thing to do is wait. I'll check back in with her often but not too often.

There might be an additional phone call. There could be a visit with her primary or a specialist. Or this could be the end of the road. The symptom will disappear as mysteriously as it arrives.

None of these scenarios involve a watershed day where life as we know it changes forever. It's possible, but very, very improbable. 

This I know. Nobody else can teach you this stuff. It's experienced, amassed, cataloged, saved then accessed. It's sorted, pruned re-sorted and re-experienced. 

Hindsight and present day are deft in their collaboration. Eighteen years at this job has taught me a lot. Thanks to these doctors-slash-colleagues, I'm hitting my stride. I'm doing this thing and I'm up for the task.

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The Emperor of All PBS Documentaries 

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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Rubric

Hotdogs

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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I Will Say The Wrong Thing

I've been a member of a lot of support groups. Support groups for cancer moms. Support groups for grieving moms. Some have been on the phone. Some have been in person, with people sitting in chairs, arranged in a circle. Some have been email groups. I've never done the chat room.

These are the kind of groups I have done. Perhaps you have participated in groups yourself. If you've been to Weight Watchers meetings, then that is a support group. Same with AA meetings. There are message boards for people in treatment for almost every disease process.

The reason you are in this group, with other people with a similar profile is that you need some kind of support you are not getting from your day-to-day life.  At least some of these people get you. Like it or not, they might be the only ones who do.

Every support group is different. But here is a common thread I've noticed among all of them.

There will be a point at the meeting when someone - you or another group member - tell a terrible story about someone in your personal life who said or did the wrong thing. You can pretty much count on some or all of the people present to commiserate with you. Sometimes the social worker or therapist facilitating the group will be quiet and listen to what all of the participants have to say. Other times, if the wrong thing is bad enough, they will join in the commiserating.

If you are telling such a story, chances are, as unique as the situation feels to you, someone else will pipe in that their boss, mother in law or crazy neighbor said the same thing. You feel sorry for this other person. But it's good to be understood.

There was one time when Jeremy and I told a story about someone saying a wrong thing that no one else in the group had heard. The group members were silenced for several minutes. People just stared. Even the people who never stop talking stopped talking. After a bit, they shook their heads.

It is important to have a safe place to vent. It is important to feel validated.

For a long time, I was too busy telling terrible stories, listening to terrible stories and commiserating with people about their terrible stories  to think about what I am about to say. When I had a little bit of mental bandwidth I thought about it a little. Once I had more bandwidth I thought about it quite a lot.

I will say the wrong thing.

I will be that person who someone brings up in the support group.  No one wants to be that person.

People who haven't been to a lot of support groups might not even think about this. They don't know what goes on in these places.

I've been careful. If someone says they are on a diet and going to Weight Watchers, then I'm not going to bake a chocolate cake, cut myself a big slice and eat it lustily in front of them. I want to be supportive. I don't want to be branded as the food pusher at the Weight Watchers meeting.

It wouldn't occur to me to ever ask an adoptive parent who the "real" mom is, tell a grieving person to snap out of it, assume a woman wearing a diaphanous blouse is pregnant, or pat a man's spare tire. The only reason I know about this is either from witnessing or reading about it.

Then there's the things I think, but don't say. Shouldn't that kid be in bed? I think you're on the Autism Spectrum.

There are lists published daily about what not to say.

Part of what worries me is that there are so many lists of things not to say to new parents, the infertile, the childless by choice, the moms of kids with dyslexia, the moms with dyslexia, the newly retired, the newly religious, prodigies, insomniacs, people with chronic illness, the obese, people who have lost their jobs, people who have lost their pets, the Gluten Intolerant, and people who have many competing multiple issues that there are too many potential bad things to remember. I'm afraid that I might forget something I'm not supposed to say.

To further complicate matters, no two people are alike. Every cancer mom I've ever talked to hated it when people brought up the idea of them having another child. They're insulted that anyone would say such a thing. They feel that there is an implication that the sick child can be replaced with a healthy one.

It turns out that two people gently brought up more children after Jacob was diagnosed. In my case, I wasn't insulted. I didn't think they were asking me to replace Jacob. My feeling was one of support and encouragement. I'm left happy that these two people didn't get the memo. Because for me, they actually said the right thing.

In spite of being careful, I have said the wrong thing. My wrong things seem to fit into three basic categories.

The canary in the coalmine

I'll notice something. I will often be the first to notice something. Other people do not notice or are not ready to notice. They feel I am being ridiculous. I have said the wrong thing. Then weeks, months or years later, they notice the same thing I did some time ago. But when I said it, it was too early. Now I try to wade in more gently. I made this improvement the other day and it worked out. But I'll probably say the wrong thing again. It's not easy being this canary.

Letting the cat out of the bag that I didn't know was in the bag

Sometimes I talk about things that are taboo to other people. I seem to have fewer topics that feel taboo for me. I'm not big on certain kinds of euphemisms. I don't know why people are ashamed or secretive about such things. But I need to remember this and respect them.

So I will inadvertently let something drop that was supposed to be covered up. It isn't a surprise party kind of thing. It isn't something that someone told me in confidence. Its something I was supposed to know not to talk about.

So now if I have something like that to say, I might just have to zip it. Or use a whisper voice.

Giving the wrong advice when the person just wanted to vent

The person will seem to be asking for advice. I give some advice. I give reasons for my advice. Then it turns out that my advice is crappy. I have said the wrong thing.

The next time someone seems to be asking for advice I'll ask them directly if they want advice or if they really just want to vent. If they say they want advice, I might remind them how crappy my advice was the last time.

There are probably people who do not care that they said the wrong thing. I'm not one of them. When I say the canary in the coalmine wrong thing or the cat out of the bag wrong thing I remember it forever. It becomes a hot memory.

Just thinking about being that person in someone's support group gives me the same deeply embarrassed feeling that is hard to live with, even though I won’t be there to witness it.

After a long-suffering time, I decided a different approach was in order.

I've come to accept that in spite of my best efforts and in spite of my awareness of what gets me into the most hot water, I will say the wrong thing. Allowing myself to think about patterns of saying the wrong thing and admitting that saying the wrong thing is something I do took some of the sting out of it.

The next thing is to figure out what to do when I say the wrong thing again.

I've apologized of course. But I'm thinking that maybe asking the other person what else I could do to make them feel better would be good. I might put forth some suggestions.

Sometimes I'll be the one saying the wrong thing. Other times I'll be on the receiving end.

A person I have known for a long time said something to me. Unfortunately, it's playing over and over again in my head like a broken record. I feel unmoored. They have said the wrong thing.

If this were a bereaved parent bad thing, I could take it to a chat room I've been invited to. I could call my very best Camp Sunshine friend.

This particular wrong statement is homeless. I'm not in that kind of support group.  I've thought about joining a support group about this topic. Unfortunately this topic has me so busy that I haven't looked for one, which is ironic.

This wrong thing that someone said needs an audience. I'm thinking if I'm this upset that the support group might need to move from the back burner to the front one. Things that don't bead up and roll off are a message. The message isn't for the person who said the wrong thing. The message is for me.

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July 1999

It was a month after Jacob died. Hannah was six months old. We were spending a hot and humid few days in the Berkshires with our extended family. Jeremy and I took Hannah to the beach to splash around. We were walking her in the stroller back to the house.

We recognized a car that belonged to one of Jeremy's siblings. It may have been a rental.  It was stuffed to the gills with children, parents and stuff. It was a right squeeze-up in there. In this state it reminded me of one of those clown cars you see at the circus. It sped by us. It seemed like they didn't see us. Or maybe they were in a hurry.

We arrived at the house to greet Jeremy's dad who was there by himself. My mother in law was playing tennis. Hannah fell asleep in her stroller. We wheeled her into a quiet room so she could finish her stroller nap.

Jeremy's dad seemed confused. Why aren't you at the pool party? He asked.

Jeremy and I were mystified. What pool party?

My father in law looked annoyed. They didn't tell you about it? We shook our heads. The three of us sat down at the dining room table. Jeremy's dad proceeded to decant pills and vitamins into shot glasses.

After a few minutes he said, they really should have invited you.

Jeremy said that he wasn't sure he wanted to go to a pool party anyway.

The three of us sat quietly for a few more minutes. One of the things I like about most men is that they don't always feel the need to fill in the silence with chatter.

I think I know why they didn't invite us I said. My father in law looked up. We locked eyes. We both looked at Jeremy who was reading the newspaper.

We all went back to what we were doing. The decanting. Jeremy started the crossword puzzle. I continued sitting in the chair and staring vacantly.

After a few more quiet minutes I said, I could be wrong. Maybe I'm reading too much into it.

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