child loss – Pushing Fifty and a Stroller

Not One More Thing

There was a long night while my son was in a coma in the PICU at Children’s Hospital when I couldn’t stop crying. I paced the halls, I stared out the window. I cried. I needed to talk to someone who knew how I felt. I had the phone number of a mom whose son had died from DIPG the year before. I didn’t know her beyond email. She said if I ever needed to talk she’d be there for me. So I called her.

She knew immediately how to talk to me. She said I could ask her anything. My first and only question was why didn’t you kill yourself after your son died? She paused. Said it was a very important question, one she’d given a great deal of thought. She gave me such a simple, personal and honest answer that I’ve replayed it in my mind a thousand times since.

She said DIPG took so much from her family. She reached a point where she wasn’t going to let it take one more thing. Not One More Thing.

I’m thinking about this now because I’m a few days away from the anniversary of my son’s diagnosis. There are a handful of days that are tied for the worst day of my life — my son’s death and burial, but also the day he slipped into a coma and the day he was diagnosed. Diagnosis Day was the day that changed everything. Our life got divided into Before and After. Problems got divided between before and after, the after ones being problems we never thought we’d have to deal with. For us, Christmas is Diagnosis Day, which is particularly horrible for my husband. He used to love Christmas.

The list of things that were taken from our family after my son’s death is unmeasurable. But it has to end somewhere. It ends with Not One More Thing.

Outrage, Hope & Fear

It was announced that Ted Nugent is headlining my local county fair this summer. He’s an aging 70s rock star who spouts hatred, misogyny, prejudice and alternative facts. I wrote a letter to the fair committee and said that after a decade of enjoying the event I won’t be bringing my kids this year. I’m disgusted that my community is hosting this a-hole. I’m pissed off. I’m…playing right into Ted Nugent’s hands.

Ted Nugent issued a statement in response to the controversy that said, “Only liars and America hating scumbags have a problem with me.” WTF? This pissed me off more. Then I get pissed about letting Ted Nugent piss me off. Then I think about how our culture is addicted to outrage, and how the media feeds our outrage, and I get even more pissed off at the whole circle of outrage…F-you, Ted Nugent, for setting me off.

school-girl-using-computer The whole thing makes me feel like I should do more yoga and meditation. Then I feel guilty for not doing enough yoga and meditation. It’s exhausting. And I’m tired of feeling exhausted all the time. And this pisses me off all over again. Is this ironic? Or merely Alanis Morissette-ironic?

But then there’s the flip side. Let me switch gears for a moment. I’m also hopeful about certain things. Like my kids. They calm me and ground me. They are my hope and joy. I’m excited to watch them navigate toward their goals despite the inevitable obstacles and frustrations they will face. I’m excited when my son talks about politics – he’s twelve and he’s into politics! He wants to make the world a better place. (He also wants to play Fortnite all the time, but oh well.)

The smile on my daughter’s face is brilliant. It fills my heart. I love watching her think. It’s like magic. The greatest thing about being a mom is the love. There’s nothing like it. The worst part is the worry. It never ends.

Which brings me to my fears. Loss is my biggest anguish. Although loss is a normal part of life — we lose our keys, hair, money, friends, jobs, our way — some of us lose our children and that’s irreparable. The loss of my oldest son keeps me up at night and it’s why I live in two worlds at once. But I would still do everything the same even if I knew having him would end with loss — I would still suffer the enormous heartbreak if I could be his mom again. And I would move time and space to make it happen.

Whales and Grief

Even on my best days I feel unsettled and disoriented. When I leave the house I check my purse several times to make sure I have everything — phone, keys, wallet — it’s all there. I go through a mental checklist, but I’m still uneasy. Then it hits me — It’s not something I’m missing, but someone.

I’ve written about how hard this time of year is for me. Seven years ago this month, my oldest son died from brain winged-heart cancer just when he was supposed to go into fifth grade. Each day that passes in August I feel my chest grow tighter and my nerves shorter. I can’t concentrate. I have flashbacks and PTSD. I brace myself for the 24th, and again two days later for when we buried him on the 26th. And then Childhood Cancer Awareness Month starts in September — but let’s be clear — I’m never not aware.

I followed the recent news story of a mother outside of Seattle so consumed by grief she refused to let go of her deceased baby for seventeen days. Medical professionals who observed her behavior said they’d never seen anything like it. They were worried for her health and even her survival. She neglected to eat. Her family never left her side. They tried to help, in fact, relatives took turns holding her baby so she wouldn’t starve or become exhausted. She became exhausted anyway, but still wouldn’t let go.

I understand this momma’s heartache. It doesn’t really matter that she’s a whale and I’m a person. Grief transcends species and manifests similarly among bereaved mothers.

Scientists wonder if the orca, named Tahlequah, actually experienced grief or if we humans projected the emotion onto her. The fancy word for this is anthropomorphism. Well, I’m no scientist but I don’t think I’m projecting. I think it’s arrogant to assume we are the only species capable of primal and even complex emotions. I recognize a sister in bereavement when I see one. I can’t deny Tahlequah the authenticity of her heartache, which was on obvious display for two-and-a-half weeks.

Like Tahlequah, I know what it’s like to not let go. I held onto my son for ninety-six days while he lay in a coma in the PICU at Children’s Hospital. At first he was minimally responsive to my voice and touch — his increased heart rate was his response. I passed long hours each day holding him and whispering I love you in his ear. Summer progressed and the tumor snaked throughout his brain, and eventually his vitals stopped indicating if he knew I was there. Still, I held him. I knew he would die when the cancer finally touched the part of his brain that controlled his heartbeat.

One morning in late August, a concerned social worker gently asked my husband and me why we thought our son was still here when he should have died months ago. I said, “For the love.” My words hung in the air when his heart rate monitor went silent and his lips turned gray.

I told my best friend I would have held him for another ninety-six days if I had the chance. She said, who are you kidding you would have done it forever.

It’s torture to never hug, kiss, touch, tickle or hold hands with my son again. No more wiped tears, kissed boo-boos, or counted freckles. High-fives, winks and pats on the back are gone. I can never crack his toes. His voice and (oh, god) his laugh — what can I say…

Some people might say I’m anthropomorphizing to think Tahlequah knew what she would lose when she finally let go of her baby, but I know there’s no other explanation to hold on like she did. It is a desperate and crazed way to prolong the inevitable — the real hell — that begins the next morning when you wake up without them.

It is now seven years after the first morning I woke up without him. I’m afraid still when I cry it will be impossible to stop. There’s a scientific myth that the cells in our bodies replace themselves every seven years, essentially making us different people from whom we were before. Except for neurons in the brain. Those don’t change. Those will hold my memories of my baby forever.

A Small Medium At Large

I don’t remember exactly how long it was after my son’s death — maybe a year — when I saw an ad in the local paper for a “spiritual gallery” with a psychic medium who could connect attendees with deceased loved ones. I made a reservation using a shorter version of my first name and paid cash when I arrived. There was no way to do any background research on me.

The psychic medium was a young woman named Nikki, and she was very nervous. She admitted it was her first time doing an event like this. About eight of us turned out, including my husband. Nikki was a tiny wisp of a woman with long hair and a sweet face. She clutched a large Diet Coke from Burger King and occasionally took long sips, and long pauses, throughout the session. Oddly, for someone so tiny and cute, she was also a former US Marine.

I’ve had readings with several psychic mediums before and after that first session with Nikki. Some were world renown. Some had television shows. One charged so much money I’m embarrassed to admit what we paid. All of them start out with generalizations and engage in what seems like fishing. I don’t fall for this and only play along to a certain extent. I wait patiently for them to say something so personal and private and specific that there’s no earthly way for them to know this detail about me or my loved one. Few psychic mediums deliver something that makes me sit up and think well that’s interesting! It happened occasionally with the famous ones, it happened with the expensive one, but among all the psychic mediums, tiny Nikki said the most personal and unexpected things.

Nikki said a prayer on her rosary before starting her spiritual gallery, and wound up giving everyone in the room a personal reading that lasted about fifteen minutes each. She was exhausted by the end of the session. I don’t remember what she said to anyone else that day, but what she told me still remains vivid.

At first I thought Nikki winged it. She spoke about my father coming through, and then my mother, but the information seemed too general. The facts applied to my parents, like they were in love their whole lives, they died months apart from lung issues, my dad was sarcastic — but none of it was personal enough to make me a believer. Then it got more interesting. Nikki said my mom was with a young blood relative and was holding his hand. He’s running around and it’s important to him to show that he’s able to do that. She claimed he wants me to give all his toys to his little brother (I had not mentioned a little brother). She was surprised there wasn’t also a little sister at home (not yet!).

And then it happened. Nikki took a long sip from her Diet Coke, then asked if I ever cracked my son’s toes. I immediately began to cry.

Who cracks another person’s toe knuckles? It’s one of those weird, embarrassing, idiosyncratic quirks that should never be revealed beyond immediate family, yet somehow Nikki knew my son and I did this all the time. I asked her how she knew, and she said, “He cracked my toe.” The lady in the front row confirmed she heard it crack during my reading. I was amazed.

Nikki finished the session by saying our loved ones constantly leave us signs, and they are always with us. Their heaven is watching us and they want us to be happy.

The famous psychic with the television show told me a person is supposed to have one amazing reading that blows their mind, and then move on with their life.

But that’s not what happened. I wanted Nikki to be a telephone line to my son. I was desperate and hopeful and wanted to connect with him on a regular basis. I returned to her galleries every four months (or so) over the next three years (I noticed the same people there as well). I wanted to know if my son was with us at such-and-such a place, or if he came along to some other family event. I wanted to feel like a complete family again and this was the closest I could come. I also wanted more signs — obvious, unmistakable ones. But the more I went to see Nikki the more depressed I got. With each subsequent visit I experienced diminishing returns. Over time, Nikki had less and less to tell me.

I realized I wasn’t being fair to Nikki. She’s not a telephone with a direct line to my son. That’s not her job. Her job is to give me comfort, let me know my son is okay, and assure me that love endures all obstacles including death.

Eventually, I stopped seeing her, although once in a while I think about making another appointment. Every year around this time I feel a strong urge to connect with my son — he died at the end of August, just when he should have been going back to school. All month I brace myself for the day he died, and two days later for the day we buried him. I have flashbacks…the funeral director telling us to “kiss him goodnight” before he shut the coffin (the same wood finish as his bedroom set). If I close my eyes I can see handfuls of dirt fall on top of the burial vault until our family and friends, one by one, finish the Jewish ritual of dropping pieces of earth into his grave.

Aside from the birth of my daughter, the only thing that truly helped me with grief was seeing Nikki. They say time heals all wounds. Well, I’m still waiting…

How I Spent My Midlife Crisis

My son is entering puberty. He’s going to be in a bad mood for several years and grow more hair. He will be hormonal, irritable and confused but when the years long transformative ordeal is over he will come through it a stronger, calmer and more mature person.

His adolescence coincides with what is supposed to be my second adolescence, or midlife crisis — or middle pause since I’m a woman. I’m also in a bad mood but my hair will thin. I’m hormonal, irritable and confused, but hopefully when my years long transformative ordeal is over I will come through it a stronger, calmer and more mature person. But chances are I will just be more wrinkled and neurotic.

My son and I grapple with the same existential questions: Who am I? What am I supposed to do with my life?

Cliche dictates most people in a midlife crisis buy a sportscar. Or they get divorced, have a makeover or fall in love with youth culture. I think a midlife crisis is the natural outcome from realizing more of your life is behind you than ahead. You think, This is it? But I haven’t ________________ yet. So you make decisions designed to shake things up. But here’s the irony about shaking things up — it teaches you what your limitations are and maturity comes from accepting limitations.

I think the best part of my midlife crisis (so far) is cultivating a what the fuck attitude. I don’t mean the exasperated/befuddled “what the fuck???!” I usually exclaim. I’m talking about fuck it/why not/what the fuck do I have to lose kind of attitude that is remarkably liberating. It enables me to try new things like this hobby called blogging, or sign up to be the oldest student in graduate school this coming fall.

But previous to this I kicked off middle age with something drastic and insane by having a baby. While most of my friends prepare for an empty nest I’m preparing for preschool (again). My life has more in common with someone decades younger than me than with the lives of my friends. I potty train, play Candyland and know which one is Shimmer and which one is Shine.

We started thinking about having another baby while our oldest son fought brain cancer. One day, we asked him if he’d like a baby brother. He said, “No thanks, we already have one of those.” Then he thought about it and said, “A baby sister might be nice.” He told us we should have more children, that we were the best mom and dad in the world.

Having more children didn’t seem crazy at that time, but it took a few years of fertility treatments before we finally had our daughter. We stuck with it because my husband and I knew one thing for sure — we love being parents.

For those looking to shake up your shit, I totally recommend having a baby. Nothing adds new life to your life like adding a new life to your life. Plus, it’s the most optimistic thing a person can do. It requires a certain amount of faith in the future. You have to believe things will get better (or at least not worse). We decided to have a new baby at the lowest time of our lives, when we needed to find joy and attempt to lessen our pain.

Those last five words bear repeating because therein lies the optimism: attempt to lessen our pain. This is a very hopeful statement. It recognizes that we could change, over time, the debilitating pain we felt after our son died. The word “attempt” means we still had some strength in us to try something. The word “lessen” is significant because it’s not the word “heal” or “end” or “fix.” It lacks totality, as it’s impossible to fully heal, end or fix the grief after losing a child. However, it acknowledges we had some power to change our situation — to make it more or less of what it was — but our pain would never be gone. The words “our pain” need no explanation.

I’m learning that second adolescence is a time to recycle one’s attitude and priorities. A time of physical change and readjustment. A time of questioning and repair.

Inevitably, I think about my mistakes. I can trace back and see several points when I made the wrong decision — my college major, quitting a job/taking the wrong job, not trying this or that. (I also see moments when I made the right choice — marrying my husband, having my kids, taking a risk on this or that). I can’t change the past, but I can attempt to lessen the impact of my mistakes (there’s that word again). I can rid my life of things that aren’t useful anymore — I’ll keep what I use and use what I keep. I’ll also detach (physically and emotionally) from people who drain me. I no longer have the patience or energy to pretend to be anything I’m not.

Oh, and I faced a breast cancer diagnosis this year (the ultimate Fuck You). Getting diagnosed with cancer puts everything into focus. It’s like perspective on speed. It forced me to face myself, let go of certain things and make decisions I had been putting off.

But all this middlepause makes me tired. From now on my motto is more midlife, less crisis.

Butterfly: My Daughter’s “Diffwent Mom”

I’ve written previously in “Like Space Mother, Like Daughter” about how my little girl surprised me with her claim she had a “diffwent mom” before me. I have since learned more details.

pretty-butterfly Her name is Butterfly, she has purple hair and wears skirts. She is married to Brian and they live somewhere cold (I asked her to show me on a map and she pointed to Alaska). Her siblings are baby twin sisters named Bella and Rosy, and a baby brother named Junior. Brian likes to fish and they eat what he brings home. My daughter says she was seven years old when she lived with them. She doesn’t know why she had to leave and live with me. She claims to love me and Butterfly the same.

I find it fascinating that Diffwent Mom’s name is Butterfly. The spiritual and symbolic significance impresses me, as many people believe butterflies represent the soul, and are a powerful symbol of endurance, change, transformation and resilience. The journey from caterpillar to butterfly is one of confusion and struggle before the creature emerges from the isolation of its chrysalis a more beautiful, enlightened, and less fearful version of itself.

The butterfly is a good allegory for recovery of any kind — from loss, grief or illness — all of which I know too well. You probably do too. A lot of people know what it’s like to go through a process of self-isolation and emerge braver and stronger.

I feel badly for Butterfly, if she truly exists somewhere she’s mourning her loss. She doesn’t know how much our little girl is loved and adored. She can’t see that she’s happy and glowing. I relate to her struggle, because I wonder about my deceased son every day. I wonder if his soul was returned somewhere in the world, being loved while he talks about his Diffwent Mom with brown hair who likes to wear flannels, whom he slightly remembers and hopefully misses. If this scenario is possible, I’d wish he’d still love me the same as his present mom.

I want Butterfly to know that I understand, and she doesn’t have to worry because I’m loving our girl enough for both of us. If I could write Butterfly a letter, I’d tell her she did a good job fostering our girl’s exuberant and silly soul which arrived intact, along with her big personality and feelings. She came with an overflowing capacity to charm and spread love, which fills my heart with joy every day.

My daughter talks about Diffwent Mom and “baby bwaddah and sistahs” several times a day. I think she was a protective and doting big sister because now she frequently wants to give them her leftover food, outgrown clothes and baby toys. She talks about their favorite foods, activities and colors. I’m fascinated by her stories, especially the details, like Junior won’t eat macaroni and cheese but her sisters love it. Her sisters have brown hair but Junior has no hair (“but him still cute”).

purple-butterfly-transparent I’m oddly comforted when she talks about life with Butterfly. It gives me hope that maybe our souls, no matter where they travel in the world, never forget love. If that’s true, then my son will never forget me. My daughter’s fantastic tale about a possible past life makes me believe my deceased son could still remember me. His Butterfly.

Our Mitsubishi

So I’ve been super busy and I’m a little late catching up on This is Us…

I didn’t cry when Jack Pearson rescued his family from the fire. I didn’t cry when he went back into the burning house to save the dog and a pillowcase filled with memories. I didn’t cry when Rebecca crumpled into a heap when she saw Jack died alone from a heart attack in his hospital bed. I didn’t even cry at his funeral.

I’d say I held it together pretty well during the the most traumatic episode of This Is Us. Until…

That damn scene in the car salesman’s office. Someone please explain to me why I fell into breathless sobs during a scene about a car?

But it’s not a scene about a car. It’s a scene about everything…

As soon as Randall spilled the soda all over the back seat and Jack turned around to glare at him my eyes welled up, but it was Jack’s voice-over that got me crying. The notion that every stain, every scratch on the family car is a “battle scar.” I get this, because so much of family life is a battle — small ones usually, but sometimes the battles are huge and they leave scars on our flesh, fabric or fender.

boy-driving-car For years our family lived in a huge sprawling city and so much of our lives wound up happening in our car. That car — a 2002 silver Mitsubishi Montero Sport — carried us through fifteen years of everyday errands and epic, cross-country road trips — oh, the amazing road trips! The spills and throw up and sand and mud and crumbs and stains! Plus the life moments and great conversations and arguments and plans!

That silver Mitsubishi Montero Sport was the first new car we ever bought. We needed a car larger than my Corolla SR-5 after the birth of our son. We needed something with a functional back seat. I remember being pregnant and waiting at a red light, looking at all the large SUVs that surrounded me. I thought, my little car can get swallowed by one of these things. I wanted something safer. In the words of Jack Pearson, I wanted us to be okay.

The plan was I’d keep the car sixteen years and then give it to our son. Sometime during the car’s fifteenth year, after it outlived our son for five years, I accidentally drove it going 5mph into a pole in the parking lot at Kohl’s. Nobody was hurt but the front end caved in. Our insurance company said the car wasn’t worth much (to them) and totaled it out.

My husband wondered if I hit the pole accidentally on purpose. (No.) He asked if I realized we were getting close to the time we said we’d give it to our son (I did.) He wanted me to get my eyes checked. (I didn’t.)

But maybe there is such a thing as accidentally on purpose.

Every once in a while in family life something comes up that marks the end of an era — a birth, death, graduation or moving houses. In a smaller way, even changing cars. Jack Pearson tells the car salesman that the Wagoneer he’s about to buy will someday tell his family’s story just by looking at it. I get this — we had a whole story planned for our Mitsubishi — but it never happened. Our car’s intended story never came to be.

I hate change. It’s exhausting. Our bodies age and change. Our hair grows and thins. Our clothes fade and fray. Our relationships…well, don’t get me started, those constantly change. Our family changes, and this is the hardest one for me to get used to. I miss the past before all the changes happened. I miss my parents. I miss my son. I miss the way things used to be.

Maybe, at some level, it’s possible I wanted to end an era. How could our Mitsubishi outlive our son? Maybe, at some level, I didn’t care that my attention was focused on looking across the parking lot for the exit rather than seeing what was looming immediately in front of me. One rule of Karma is there are no accidents, but don’t tell that to my insurance adjuster.

I understand what it’s like to want to be okay. At first it seems like a mediocre goal — one even I can reach. But it’s not easy. I should know. I’ve been trying to be okay for years and I’m not there yet.

Could it be possible I slow-crashed my car to get closer to being okay? Sure, there are easier, smarter and better ways to change cars.

But like I said, it’s not really about the car.

Phrases I Hate

Thanks for sharing
Cancer journey
Thoughts and prayers
Is there anything I can do?
Checking in
You’re smarter than you look
You’re not that fat
You look the same/You never change
I’ll pray for you
Everything happens for a reason

The Pineapple Tree

UPDATE 2/4/19: I received a text that they found the plaque (I don’t know where). It will be placed in the garden next to my son’s pineapple tree.

There’s a fat, squat palm tree that looks like a giant pineapple in the courtyard of the elementary school that my oldest son attended for most of his short life. He loved that tree. He ran endless laps around it to burn off his exuberant energy. He climbed up the knotty pieces that jutted out from its sides until a teacher chased him down. He balance walked all over the display of rocks set around the tree, and sometimes he simply stood beneath it and stared up at its miraculous starburst formation and let the golden sun shoot through the empty spaces and illuminate his curious face.

People took note of how much he loved that tree and started calling it “Mason’s tree.” Kids told each other to meet at “Mason’s tree” to play tag, and of course my son would play too. When we moved away I wondered if they’d still call the tree by his name. A few months after we moved, my son was diagnosed with incurable brain cancer. We received a lot of support from my son’s teachers at his old school — Mason had the gift of charm and was easy to fall in love with and hard to forget.

After he passed away I ordered a memorial plaque and the aide from his kindergarten class oversaw its installation. I was sent pictures from thousands of miles away. I’m told my son’s friends arranged rocks around the base of the stake for decoration and protection. I was deeply touched by everyone’s expression of love for my son.

Those friends moved on to Junior High and then High School. The kindergarten aide retired. After a while, only three of his teachers remained. The school changed Principals. The building underwent improvements. Years went by before I returned for a visit, and when I did I dropped by to finally see the plaque.

But it was gone.

It was after school when I snuck onto campus and the office was closed. I called the next day and left a detailed message for the Principal. She didn’t return my call. I called and spoke to the office secretary again. The Principal again didn’t return my call. Finally, she told me she’s never seen the plaque and never heard of my son. She’d ask around, but it’s likely gone.

One time when I was in the fifth grade the boy who lived across the street punched me in the stomach and literally knocked the breath out of me, so I know what it feels like to not be able to breath. The feeling I had when I hung up the phone was similar — fast, shocking and unexpected — my breath was gone.

Nobody wants their child forgotten. Nobody wants the memory of their child disrespected, especially in a place that gave him so much pleasure. My son was a friend to everyone who met him. He loved his school and felt love from his teachers.

I needed to find out what happened.

I flew home and waited. A month later I sent an e-mail. Finally seven days later (after a follow-up asking if she received my e-mail) the Principal finally responded. She said she asked around and nobody knows what happened. Sorry, she said, she tried her best. I got the feeling she wanted me and the whole uncomfortable and inconvenient business about a plaque for a dead child she never knew to simply go away.

But I wasn’t going to go away.

I followed up and urged her to look in closets, boxes, cabinets, everywhere. I figured someone wrapped it up and put it somewhere during the improvements, and with all the staff changes it simply got misplaced. I figured it was somewhere and it could be found if someone looked for it. If I lived closer than 2,000 miles I’d do it myself. I offered to send friends to look, but she didn’t want that.

She did everything she could, she said. I told her — I understand it didn’t go missing on her watch, but it’s kinda her watch now and it falls to her to find it. She said she didn’t see it that way.

I get it that after my son died the world had the audacity to keep spinning. I get it that nobody probably meant to throw away a memorial plaque for my dead son. It’s likely missing because of thoughtlessness. But it’s a thoughtlessness that feels cruel.

If I close my eyes I can see my son’s pineapple tree. It was our meeting spot at the end of the school day. I’d park down the block and walk over to look for his shiny dark hair among the blush of boys, and finally spot him dancing and running around the giant base of his tree. I’d catch his bluish-greenish eyes that changed color depending on the color shirt he wore. My heart skipped a beat every time.

And I’d pause to catch my breath at the sight of my beautiful little boy.

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