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.

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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Why Does Mommy Swear?

boy-scared-faceYou can hear it in the air. You can hear it everywhere. Does she even care? Why does Mommy swear?

She swears at other drivers. She swears at rude connivers. She swears at messy spills. Is this how she gets her thrills?

She swears when she is late and she cannot find her keys. She swears when she is busy and must stop to take a pee.

She does it when she cooks. She does it when she cleans. She doesn’t try to hide it and she isn’t being mean. She sometimes swears a little, but usually swears more. She even says words that I never heard before.

Is it because she’s tired and always feels a bit perturbed? Or maybe that her hands are too full to flip the bird?

Why Mommy swears a lot is a mystery, you see. She seems to swear at everything, but she never swears at me.

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.

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. 

A Letter to My Son on His Twelfth Birthday

Hey Baby,

I call you “baby” because that’s who you are to me. My sweet baby boy with the enormous eyes like Oreo cookies.

Happy Birthday, Baby. You’re changing fast. Two weeks ago you weren’t taller than me.boy-with-birthday-cake-and-confetti Now you’re taller than me. You have an adorable faint mustache, and your voice is in its Peter Brady phase. You used to have baby fat, but now you’re lean like a library ladder. It’s almost like you’ve become a different person overnight.

But you will always be my baby.

You were born into this family as the little brother. Your big brother loved you like crazy. You followed him everywhere. You climbed on his lap and the two of you stared at the little DS screen together while he played his games, and you cheered him on. He protected you from icky bugs, made sure you learned “parking lot rules” and taught you about Pokemon. You shared sushi, toys, a room and a deep love for each other.  Many nights I’d find you asleep holding hands across the empty space between your beds.

The role of little brother fit you perfectly. You were a silly goofball, carefree and happy.

Then your brother got sick with brain cancer. You were left frequently with your Aunt. You were confused. Things changed. Your brother changed. He looked different. He was in a wheelchair and spent months in the hospital, but all you wanted was to be near him, hug him, talk about Pokemon and make up scenarios for your “guys” with the hundred stuffed animals you both owned. He put his arm around you when you climbed into his hospital bed to watch Nick Jr. You fell asleep holding onto him.

You were an only child for a few years, and this role didn’t suit you. You were anxious and lonely. You never wanted to leave my side (and I didn’t want you to, anyway).

Then you became a big brother to a little sister who thinks you hung the moon.  You thrive in this role. You are an amazing big brother, and you say it’s because you learned from the best. You are protective and fun and funny. You teach her about Pokemon and sushi and “parking lot rules.” Now she’s the silly one and you’re the protector.

I am so amazed by you. Every day I am inspired by your resilience. I aspire to the level of kindness, compassion and curiosity you demonstrate naturally. You are my living example of how to be a good and strong person.

Did you know you saved my life? You were the reason I woke up and got out of bed the day after your brother died. Without you, well, I can’t imagine… You have transformative superpowers in your smile. I am helpless against your cuteness. You give me courage to face any challenge. Last year I wrote an entire screenplay about everything I learned from you.

You own my heart.

When you grow up you want to be a doctor/actor/comedian/research scientist/theoretical physicist — and I think you can make it. I believe in you.

You have a great friend group who accepts you with all your aspirations and antics, especially your bestie who is sunshine in boy form. You look out for each other like brothers — what more can you ask from a friend in Jr. High? What more can you ask from a friend in life?

But don’t be in a hurry to grow up. Stay immature and goofy a while longer. Stay silly. Stay innocent. And I know you will…

Recently, you said, “I know how babies are made. The man puts his ding-dong into the woman’s slipperslap, and then a baby comes out.” First of all, I don’t think I ever heard a better slang term. I’m the proud mom of a word inventor. Second of all, not quite. You really don’t know much at all, and that’s awesome. With all your excelling in academics, I’m relieved you lag behind the kids who ride the bus, go to sleep away camp or hang out behind the 7-11 when it comes to maturity.

I love that you’re a bit of a nerd. I love your dance moves and dry sense of humor. I even love our arguments (you’re so good at it!). You make me laugh every day. You make me happy. And you make me proud.

You make me look better at this job of being a mom than I actually am.

My birthday wish for you is to find your place in this big world. Do not to be overwhelmed by choices. Stay close to the people who love you. Keep a calm heart. Seek happiness, whatever that means to you — you deserve it. Your past doesn’t dictate your future.

Thank you for being mine. Promise me you’ll never be too old to snuggle and watch Saturday Night Live on the couch. And thank you in advance for letting me live in a tiny house in your backyard when I’m an old lady.

Stay cool, Baby. Have an amazing birthday!

I love you more,

Mom

 

Things My Daughter Says (With Exclamation Points)

  1. “You know how much me yuv pink!”
  2. “Me foosey!” (thirsty)
  3. “Me want a donut and Barbie!”
  4. “Where da skizzers an da sticky tape?!”
  5. “Me like lollipops tooooooo much!”
  6. “Me want all da toys me seen on TP yestehday!”
  7. “Me only ticklish everywhere!”
  8. “Tushies are stinky!”
  9. “Me want to win!”
  10. “Me want to be pretty yike a unicorn!”