Category: family

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.

black-heart-divider

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-computerThe 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.

Searching For My Mother at the Sale Racks at Marshall Fields

I’m eleven. I’m sitting on the floor in a dressing room at Marshall Fields, Skokie,girl-dressed-like-mom looking for straight pins stuck in the ivory shag carpet. This is what I do to pass the endless hours while my mother works her way through a pile of skirt suits from the sale rack. Back then, my mother has only two weaknesses  — pecan pie from Poppin’ Fresh and the sale rack at Marshall Fields. She has no willpower in the presence of either.

My mother buys skirt suits to wear to Temple on Friday nights. She is sophisticated and business-like and elegant. My outfit for services is a lavender plaid A-line skirt, a matching lavender fuzzy sweater and chestnut leather zip-up boots with a chunky heel, all from Marshall Fields. I wear this same outfit nearly every Friday. 

As an adult, when I have insomnia, I like to walk through certain places in my mind. I imagine I’m in my childhood elementary school, where I pass through florescent-lit hallways, the gymnasium, and cafeteria. By the time I arrive at the outside playground, I’m asleep. Other times I walk through my childhood Temple. I open doors, look behind curtains. I know every shortcut in the entire building, and I take them. I go to the choir room, the kitchen, the teen hangout with the broken foosball table, and the other kitchen. I stop by the office where I see photos of smiling Hebrew school students on the wall. 

When I don’t walk through my grade school or Temple, my mind heads to the mall of my youth, Old Orchard, where I stroll through Marshall Fields. Not the kids department — but the racks of women’s ready-to-wear and sportswear because I’m shopping with my mother. We walk the racks together in search of bargains in my imagination. 

My mom passed away from cancer when I was seventeen. She had been ill for three years prior, and, obviously, we didn’t do much shopping during that time. Shopping may seem frivolous, but it was her happy place. She’d relax while she methodically slid hangers across the metal bar, one after another, then was rewarded once she’d find a seriously marked down treasure. Some mothers pass down heirlooms, or beauty, or property. My mother passed to me her meditation ritual called shopping. My sister, on the other hand, is shopping-averse. She has anxiety in stores and hates to try things on. She’d rather be at the dentist than in a fitting room, and she thinks this is from endless hours spent waiting in the dressing room at Marshall Fields. To cope, she whined rather than give up and count straight pins. 

Years later, there is no such thing as Marshall Fields anymore, and this makes me sad. When I feel nostalgic, I sometimes wander around Macy’s (who took over the store) but it’s not the same. They sell Frangos, but the candy tastes different. I visit the Estee Lauder counter and smell the scent of the face cream my mother wore. Or maybe I scoop up a pile of clothes from the sale rack and lock myself in a fitting room for way too long. I take my time while I look for a great outfit, but I will only buy it if it’s on sale. I am, after all, Elaine’s daughter. 

I have my own daughter now, who is a great little shopping partner, but I don’t take her to Macy’s or even the mall. Instead, our favorite shopping is at thrift stores. I’d rather spend time with her eye-balling racks of random things in search of something worth buying than be overwhelmed at a sprawling department store. I like that she learns discernment, recycling and patience at a thrift store. And hopefully, how to get lost in her own thoughts. 

Growing Pains

Yesterday you held my hand, now you hold your phone.

You drew me pictures, now you send emojis. You never left my side, now you rarely leave your room. You wore clothes with characters, now you wear labels. You played make-believe, now you play Fortnite. You checked for loose teeth, now you check Snapchat. You hid from thunder, now you barely shudder.

Yesterday I was your world, now the world is yours.

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To The Nice Lady on Michigan Avenue Who Told Me I Was A Good Mom

I’m tired. It’s a tiredness born from from stress.

A week ago I had reconstruction surgery on my breasts after having a mastectomy last March to rid me of breast cancer. Everything went well, there were no surprises, and I consider myself lucky. I had my follow up appointment with the plastic surgeon, who seemed pleased with his work. I’m still sore, swollen and bruised, so it’s hard for me to agree at this point, but we’ll see.

I brought my little girl along for the two hour trek into the city. She was perfect at the plastic surgeon’s office, wonderful at The Museum of Contemporary Art, adorable at the playground. But…The Disney Store was one outing too much and her meltdown ensued right there on Michigan Avenue. I pleaded, “I can’t carry you because of my boo – boo.”

And that’s when you appeared.

You were older, maybe 70, and very nicely dressed. You told my daughter you loved her sparkly Hello Kitty boots and pink baret. You said they were nicer than any shoes you had. My daughter hid behind me and didn’t talk. You smiled at us. Then your expression turned serious and you said. “You’re doing a good job.”

And then you were gone.

You have no idea what that meant to me at that moment. Your affirmation made my day, and this was no normal day — It was a day I cleared a major medical hurdle. But at that moment you spoke directly to the heart of who I am. You somehow knew what I needed to hear.

And I thank you.

When I Wasn’t Looking

  1. My hair started graying
  2. My son stopped watching cartoons.
  3. My son started using words like “actually” and “ludicrous.”
  4. My joints started creaking.
  5. My clothes stopped fitting right. 
  6. My eyes got worse.
  7. My son started making his own breakfast.
  8. My son started putting himself to sleep at night.
  9. My son stopped being afraid of thunder.
  10. My soul got calmer.

Alternate Names For My Husband

  1. Irritable Bowelius Cesear  — His Roman Name
  2. Sir Snacksalot — His Knight Name
  3. Hopalong Hernia — His Cowboy Name
  4. Appendicitis Rex — His Dinosaur Name
  5. Billy Poang — His IKEA Name
  6. Norden Ektorp — His other IKEA Name
  7. Toenail Talons — His Street Fighter Name
  8. The Amazing Belly Laugher — His Circus Performer Name
  9. Ex Pensive — His Rap Star Name
  10. Pubic Zirconia — His Stripper Name

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 brainwinged-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. 

Drinking Games

  1. margarita-transparentTake a drink every time I enter a room but have no idea why I came in.
  2. Take a drink every time I ask, “Where’s my _________________?”
  3. Take a drink every time someone asks, “What’s for dinner?”
  4. Take a drink every time I pick up someone else’s dirty dishes.
  5. Take a drink every time I sit in front of the computer but forget what I wanted to google.
  6. Take a drink every time my husband can’t find his phone.
  7. Take a drink every time my daughter asks for a new toy.
  8. Take a drink every time my son can’t find his shoes.
  9. Take a drink every time I have to pee in the middle of the night. (counterproductive?)
  10. Take a drink every time I sit down to write but forget my train of thought.
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