Anxious as a Mother

The other night, Quinn came home from a monthly dinner with his preschool friends and their families, visibly upset, tears pooling in his enormous blue eyes. I pulled him in for a hug and asked what was wrong.

I’d left dinner early to get Noelle to bed, and wondered if I’d missed an incident. As soon as his head was against my chest – when did he get so tall? – his body shook in sobs.

“Oh, buddy, what is it?” I asked. 

“I just don’t want people to keep dying,” he said. 

I racked my brain. Who had died? Had we talked about death recently? We’d just returned from a nine-day trip to Seattle to visit my best friend and her family. Her daughter, my 14-year-old god-daughter, was diagnosed with melanoma in May. That is a whole other post because FOURTEEN ARE YOU KIDDING ME, but two surgeries later and doctors have declared her cancer-free. So we’d talked a little about cancer -- it seems we always talk a little about cancer -- but not about death.

My big-hearted boy

“What brought this up?” I asked Quinn. 

“I’ve been thinking about it since that magazine I read in Seattle,” he said.

What magazine? I wondered. I still don’t know. 

He could see I still looked puzzled. “It was a medical one about people donating their organs, and I just wish people didn’t have to die. I want them to drink from the cup in Indiana Jones.” 

“Remind me what happened in Indiana Jones?” I said. I’d been chatting with Alana on her deck for half the movie, watching the late summer sunset while he’d watched the movie with his cousins. 

Movie night

“There are several cups, and lots of them are deadly poison, but one is a potion that lets you live forever," he explained, his eyes lighting up. "Why can’t we find that and give it to everyone we know, and the people we don’t know, too, so no one else has to die?”

“I don’t know, bud,” I said. “We haven’t figured out how to do that, yet. But hopefully it’s not something we need to worry about for a long, long time," I tried to put an optimistic spin on it, even as I wondered whether I caused this. Is it because he sees me upset about losing friends to cancer? Is it because I had cancer, and his grandpa died of cancer before he was born? Is it because I have other anxieties and fears I'm working through as we speak? Is it just a normal age-appropriate fear that has nothing to do with me? 

And then he surprised me. “I wish I could talk to God about it,” he said.

We are not a particularly religious family. To put it lightly. Chris and I were both raised Catholic, but have stepped away from the church – and any organized religion, really – at different points in our lives. My leaving came more recently, a disillusionment after my cancer diagnosis that I haven't quite figured out how to reconcile.

I don't think I got better because I prayed harder, but I still value the power of prayer. I also respect that millions of people find solace in their churches and church communities. If my son needed this, I would support him.

In parenting, I sometimes have to observe silently and allow my kids to discover their own particular beliefs about how the world works. My job is to support them in a safe, loving, accepting environment as they make sense of this universe in their developing brains. 

So I responded, “Well, you can talk to God, if you want."

"I can?" he asked, like I'd just shown him how to time travel.

"Of course," I answered. "He may not answer back, but we can talk to him. Would that help, do you think? Should we pray?”

“Mmmhmmm,” he answered, and suddenly he seemed so much younger to me than the big kid who just started third grade. 

Of course he needs something external to give him hope and promise that all his worries might be okay, I thought. I don't always have those skills as an adult, and I go to intense therapy every other week. 

I tried to remember how to pray. 

Now I lay me down to sleep. No, too morbid. I asked Chris if he could remember the non-terrifying version of that one. “Nope, that’s all I knew,” he said. 

Ok, The Lord’s Prayer, then. “I used to start with something like this,” I said to Quinn, “something I knew by heart and could repeat every night.” And we went through it, line by line, a matter of rote memorization to me, unfamiliar to him. We finished and he asked a lot of questions about forgiving trespasses and the meaning of temptation.

Am I doing my kids a great disservice by not taking them to church? Why is being an adult so tough?

On Father’s Day, I’d taken both kids to a Mormon Church service. Chris was in Tanzania, and Quinn had requested to go to church where a couple of his friends go. Arrangements were made, we dressed up in our Sunday finest, and listened to the service about a father’s love for his family. Quinn’s friend’s dad gave the sermon, and teared up as he spoke about his dad always being ready to play ball with him, even when he was still in his work clothes and it was still 100 degrees outside. He’d roll up his sleeves and they’d head to the backyard. Such a simple act of love. I thought of all the ways dads show their love, of my own dad, and I wondered if Quinn was absorbing this or just happy to be sitting with his friends eating peanut M&Ms. 

Back to our praying. I recommended that he start with something easy to remember, and then go through what he’s grateful for. “It can be really helpful to think of all the things you’re thankful for. It always makes me feel better,” I explained.

“Everything,” he started. Oh, this boy. My heart. His enormous one. “I’m grateful for my family and friends, for Noelle, for food, our house, clothes, school…”

“For your powerful brain that lets you learn,” I added. “I’m thankful for you,” I said. “And my health.” I was holding him, lying next to him on his bed, our heads resting on stuffed animals.

“I’m thankful for our cars, for our pets…” 

“Yep,” I said. “And then from there, you may want to ask God about what it is that’s bothering you, or what it is you want. When I was little, I would ask God to protect my family, keep soldiers safe and bring them home, make sure children around the world have food, that kind of thing.”

“But what about why we came in here?” he asked. “I want to ask God to stop people from dying.”

Oy.

Our conversations about this have continued for several days now. We've talked about how to cope with our fears, even when we know they won't go away completely. How to use deep breaths and meditation to make the tightness in our chests feel less constricting. We've talked about how I go to therapy, and why that helps.

About how I try to give back to my community in the cancer world to honor those who have died. How Chris aims to be a good dad to keep the memory of his parents alive.

We've talked about how everyone dies, so that what's important is making this life count, and remembering that we are here today.

I've promised him that it is always worth it to love so big, even if it means occasionally losing big, too. To not let his fear shut down his willingness to open his heart.

We've talked about the importance of movement and laughter and, yes, prayer. We've journaled together, written a short story about overcoming fears and finding courage, and have tried dance parties in our kitchen.

But he is just like me in this way. We feel deeply. His empathy knows no limits, as far as I can tell. I only hope we can work through his anxiety a little earlier in life than I started figuring out how to approach mine.

Oof, parenting is exhausting and all-consuming sometimes. (All the time.) AND I HAVEN'T EVEN MENTIONED THE TODDLER.

To the Dogs Who Run in Rough Waters

Almost ten years ago, Chris and I celebrated our honeymoon on Maui. We coordinated the trip to align with a dear friend's wedding -- the same friend who suggested I start this blog, actually. (Hi, Sara.)

Sara and her husband Steve's wedding was breathtaking, set on a hilltop overlooking Molokini. The groom's cake was in the shape of a Hawaiian shirt (because they don't take themselves too seriously and cake that looks like a floral shirt makes everyone happy). There was a reading called the blessing of the hands that went something like this, and had many of us choked up:

Blessing of the Hands

These are the hands of your best friend, young and strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today, tomorrow, and forever.

These are the hands that will work alongside yours, as together you build your future.

These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other.

These are the hands that will hold you when fear or grief fills your mind.

These are the hands that will countless times wipe the tears from your eyes; tears of sorrow, and tears of joy.

These are the hands that will tenderly hold your children.

These are the hands that will help you to hold your family as one.

These are the hands that will give you strength when you need it.

And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a touch.

I still get choked up reading that. Because I am a sap. I can't help myself.  

As Chris and I celebrated our new marriage (we were so young and innocent then!) and our friends made vows to begin theirs, another new romance was budding. Our mutual friend Patricia hit it off with the groom's cousin, which was somewhat scandalous and amusing at the time.

But the heart knows who the heart wants.

Four years ago, Patricia and TJ got married in DC.

Four years ago: me with Patricia (center) and Sara, who inspired me to start this blog

The stunning couple

***

More than a dozen years ago, Patricia and I were neighbors in DC. We became friends shortly after her mom passed away from stomach cancer. She saw me through my own heartache, but she was never one to wallow so neither could I. With a sternness befitting someone who spent her early years in communist Hungary, she would push me to get back out there and remind me that I'm fabulous just as I am.

She watched my cats when I went out of town; scolded me when I'd have a late-night cigarette after getting home from a bar (she could hear my window open, and would open hers to tell me to quit it); and gave me something to aspire to because she OWNED her condo which I thought was the epitome of success.

And then, when I had moved across the country and was diagnosed with cancer, Patricia was one of the first people to swoop in and help take care of my family after my mastectomy. I hardly remember the week she was here, I was in such a Vicodin-induced stupor. I'm sure she told me to be nicer to Chris. She made Quinn giggle and brought him books, and made sure our cats were fed. She probably made sure we were fed, too.

Through all of this, her love TJ was in and out of stability (though not remission) from Hodgkin's Lymphoma. In his own words this spring:

So not only was Patricia caring for my family, but she was also worried about her own spouse. She mentioned a time or two to me that she was terrified, that being a caregiver is FUCKING tough, but she was always quick to put the focus back on TJ (and me). "It's YOU guys who have to go through it  all and have all this poison put into your bodies," she'd say.

When I'd occasionally go back to DC for advocacy work or a visit, I'd try to meet up with Patricia and TJ. He and I would compare treatments over miso soup or brunch. We'd talk about port discomfort and side effects. But that gets boring pretty quickly even to cancer patients, so we'd also try to talk about current events, trips we had planned, and how hopeful we were. Science is always making progress, right?

***

I have often referred to Hawaii as my happy place. I think part of that stems from having lived there for a few years as a kid and having these incredible memories: of rolling in the waves, learning to boogie board, sandy hair after a day of swimming, camping on the beach (even if centipedes crawled up the outside of our tent), and climbing the intensely fragrant plumeria tree in our front yard to gather flowers for making leis.

Overlooking Hanauma Bay, circa 1982

My younger brother and me on Oahu, possibly the last time I was taller than him

In the spring of 2016, our family of three went to Kauai to spread Chris's parents ashes off the coast, as they had requested. They loved the aloha spirit, too. And Hawaii was still my happy place, but that was an admittedly bittersweet trip. Not only did it feel like Chris was saying a final good-bye to his mom and dad way too young in life, but I had just had my last infusion of chemo and would come home to have the scans and lung biopsy that turned my cancer story upside down.

About a week and a half ago, our family returned from another trip to Kauai. This one was planned as a weeklong celebration of my friend Julee's one-year cancerversary. Is there this much cancer in your stories, too?

How does she look so well-rested after a 7 a.m. hour-long hike??

And to most people who ask, I'll say this latest trip was magical and amazing, because it was and that's still what Hawaii means to me. I'll talk about taking surf lessons with Quinn, and the complete freedom and glee I felt standing up on that board after watching my 7-year-old son do the same. I'll describe our after-dinner walks in the dark down to the beach to visit the sea turtles who'd come ashore to rest for the night, and the night sky that was lit up with a billion and one stars. I'll say that the first few days were an adjustment because of Noelle's sleep schedule and the time change, and that next time we need to just go for longer -- obviously, the only solution is MORE time in paradise. All of that is true.

What I haven't told many people is that shortly after we landed on the 4th of July, I saw the news that TJ had passed away that morning. I immediately reached out to Patricia, but after so many losses, I still don't know what to say when a 33 year old dies.

"I'm so, so sorry. I love you. We just arrived in Hawaii, which will always remind me of the beginning of your love story. I can be there soon if you need me."

I sobbed in the Safeway parking lot in Lihue, as Quinn kept asking what was wrong from the back seat, bless his enormous heart. I drank too many mai tais that night. When Noelle woke up at 5 the next morning, I wrapped her to my chest, walked down to the water, and cried big tears next to a Hawaiian monk seal, an endangered species native to the islands and -- according to Wikipedia -- known to native Hawaiians as ʻIlio-holo-i-ka-uaua, or "dog that runs in rough water." I marveled at the power of the ocean and felt a terrible tug in my heart.

I couldn't believe he was gone.

Because honestly? On the question of one of us dying, I always expected it would be me. For years, my prognosis was worse. I have no idea why I have survived and TJ (and dozens of other friends) have not. To bear witness? To advocate for more funding for research and rally for politicians who don't want to take our access to healthcare away? To remember that love and connection are risky but worth it because they are also everything?

If cancer and TJ have taught me anything, it's to find some greater purpose and live it without apology.

Here's to the dogs who run in rough water, to those among us dying too young, and too quickly. May they inspire us and remind us to live our best lives RIGHT THIS MINUTE.

On Death + Healing + A Little Bit of Football

I haven't talked to many kids about death. But kids, I find, are generally equal parts curious and blunt. My six-year-old, Quinn, casually asked me last weekend: "What if my baby sister stays in your belly until my birthday, in March?"

"Then I'd be in some kind of record book," I said. "I promise she'll be here in the next couple of weeks."

"What if a mom was pregnant for 5,000 years?" he wanted to know. Then, quickly, "I guess then both the mom and baby would be dead by then."

In the abstract, death is a concept that isn't yet scary to him -- or wasn't, until very recently. He wants to know how old the oldest person on Earth is, why people can't live to be 600 years old, and very occasionally, he'll tell me he's worried we might need to move to another planet because ours is getting too hot. To be fair, we live in Phoenix, where it was still hovering around 100 degrees the week before Halloween. AND his dad is a climate scientist/geologist who studies the correlation between climate change and human evolution, so that could contribute.

Quinn is curious about our collective mortality, but death hasn't seemed imminent in his life (other than my bout with metastatic breast cancer, which he doesn't remember very well, and my mother-in-law's passing away more than two years ago -- also not a strong memory for him).

If you follow me on Instagram, you might have seen that Quinn had his first stitches three weeks ago. Because October wasn't awful enough already.

There's no filter that makes this less heart wrenching. 💔 He's okay but the fear of seeing my baby's head split open is something I don't know if I'll ever forget.

A post shared by Jen Campisano (@jencampisano) on Oct 24, 2017 at 8:36pm PDT

Chris was at a geology conference in Seattle, and Q and I were watching Monday Night Football. Quinn wants to be an NFL player when he grows up.

He loves everything about the game, and cheers for teams as wide-ranging as his flag football team the Patriots to the Seahawks because they're my team to the Cardinals because Arizona to the Eagles because his favorite color is green. Three weeks ago, Mack Hollins, a rookie wide receiver for the Philadelphia Eagles, caught his first career touchdown pass, and in Quinn's estimation, nailed his end zone celebration.

Quinn tried to recreate the dance on his knees, on our couch, and, in a rare moment for him, he lost his balance. In what seemed like slow motion, he fell, head-first, and smacked into a leather-covered ottoman storage cube, then landed head-first on the floor. I didn't think it would be that bad because the cubes are padded on top. But he hit the unpadded, stitched corner, and when I scooped him off the ground, his forehead was gaping open and blood soaked my t-shirt. While I quickly set him down and assured him he'd be okay (as I tried not to show him how terrified I was and ran to the kitchen for an ice-pack and a towel), he kept repeating through his tears, "I'm so scared, I don't want to die."

My heart felt like it was being twisted and wrung out like an old dishrag in that moment.

I promised him he wouldn't die. I called 911 and just a few minutes later, several firemen stood in our living room and assured me he would be fine but also that he'd need stitches. "Can you do them here?" I asked, naively. They don't offer that service, apparently. We went to the emergency room at Phoenix Children's, where several hours later, Quinn got five stitches.

I'm not sure at what point he calmed down -- though it came more quickly for him than me. I was still  sobbing about his head and the wrenching ache in my heart days later, always at night when the house was quiet and my brain started racing again. I am more okay now, though Quinn's words have been replaying in my head the past few days.

***

My friend Beth Caldwell died ten days ago. Her daughter is Quinn's age, give or take a few months. Beth's husband, J, has been posting updates (up until his FB account was blocked because of a troll). Their kids are having trouble sleeping. As someone who still snuggles with Quinn every night until he falls asleep (and lately, I'm falling asleep with him), I get it.

How can you assure children that there's nothing to be afraid of after dark when their world has just imploded?

I haven't known how to write about Beth, but at some point I figure I needed to, whether I know what to say or not. In the last ten days, as Beth's husband points out on Twitter, this country has lost another 1,130 women like Beth to metastatic breast cancer. 113 every damn day. In the last ten days, Beth's husband had to live through their fifteenth wedding anniversary without his lovely bride.

And while we in this community are all too sadly familiar with grieving and death and losing our friends, there are some people who are just different in their scope and impact and the vast vacuum of emptiness felt in their absence. Beth was one of those women, and even now, it is so hard for me to write about her in the past tense. I told her husband that she and I used to joke we wished we'd met in law school, or over bourbon -- anywhere but because of cancer. Stupid fucking cancer.

Yes, you've seen this photo before, but - regrettably - it's the only one I have with Beth. Note to self: take more photos.

I know I'm not the only one who feels this way about Beth. She was a friend to so many of us, and a fierce advocate who led by example. She was whip-smart, even when she thought she was at her worst. And as I advocate in the years to come, I will always ask: would this have helped Beth? Will it do more to keep the Kelly's, April's, Danya's, Dana's, Rebecca's, Jennie's, Nicole's and Kisha's in my life alive? In other words, does it live up to Beth's standards?

I don't know what else to do to carry the torch she lit.

***

I woke up at 5:30 this morning to our meowing cat scratching at our temporary bedroom door. Temporary since we are still in the throes of a remodel because... I don't know? Paint is more complicated than I could have imagined? Even without the hungry cat, I'm not sleeping well. I'm 39.5 weeks pregnant. Waking up forty-five times a night is nature's way of preparing you for the sleeplessness of a newborn, blah blah BLAH. Whatever. I just want to stop peeing every two hours (or every time I sneeze).

This morning, I read through the news and my Facebook feed. I noted that the forecast has us at 86 degrees today. I saw that Beth's husband's Facebook account has been suspended because some terrible person reported him for who knows what... Grieving too hard? And I don't know how to stop being angry.

But then Chris woke up and we had coffee together. And Quinn woke up and I remembered him singing "Hush Little Baby" to my belly last night, how my heart finally felt un-corkscrewed. There was no longer a tornado brewing in my chest. Instead, it swelled to the fullest it has felt in weeks. As the Grinch would say, it near tripled in size, and love poured down my cheeks.

***
Quinn's head is healing. There is a pinkish scar that extends for about an inch above his left eyebrow. I massage it gently a couple of times a day. He's no longer asking me about death. His flag football team has their playoffs this weekend, and baby-willing, I'll be there to cheer him on.

I wish some calendula or coconut oil and a weekend of football could heal every kid's pain and scars so easily.