It’s no secret that life is made up of the moments in between the moments. The hammer impact is only possible because of the long arc of the arm beforehand.
The already-tired metaphor of social media being a highlight reel is true. And now we’re finding this seeping lack of content in our lives when “nothing is going on.”
But it’s the sweet spot.
Laying on the couch watching a movie. The monotony of your morning run, 6 months in. Coffee at 7 before you head to work – maybe alone, maybe with your SO. Cleaning the house as a family on Saturday afternoon. The park.
There’s this movie that came out recently called Tully. Charlize Theron plays a new mom, and they get this rebel girl nanny in her early 20s. Charlize is jealous of the drama of this impetuous woman, and they get into a yelling fight at one point. “Why are you mad? This is what you dreamed of!” shouts the younger. “Stability; love.” She’s right.
I’m not proposing we abandon risk. I love adventure and crave a challenge. I like to splash the unknown in the ramen bowl of my life. Balance in all.
We have to embrace the contentment within those in between moments. Rest in, recharge in, and enjoy them instead of becoming frustrated or depressed in the lack of climactic moments. No one wants a whole meal of the hot sauce – it’s meant to flavor and accentuate the main focus.
On Thursdays, we get together at some friends’ house for a weekly dinner.
We were talking afterwards about this piece in the Bible where Paul is in the middle of all these crazy things happening, and then it says simply that two years passed while he was on a soft version of house arrest. The next sentence picks right back up with interesting and dramatic happenings.
What happened for those two years?!
I’m often there. In those years / places where nothing is happening. Which is of course a lie – so much is happening. But none of those “big moments.” Your friend says to you “hey what’s been going on?” and you say “Uh, nothing, really. Just work. Khamira’s in school. We go to the Y on Tuesdays. I’m experimenting with curry a bit.” And maybe you feel your “in between moments” answer is lacking the hook.
Some of this is just cliché rhetoric, but it’s been on my mind this week. I felt like I was losing focus on pieces of life because we’re “headed towards ____” or “almost to _____.” Friendships are built up in those in between moments. Families are molded. Skills are mastered.
We’re supposed to have three boys. We’re supposed to have a ten year old, and two 8 year olds.
We have an 8 year old.
Charley would have loved having brothers. He’s such a social kid. Robyn said it’s one of the many things that breaks her heart often still – that Charley was robbed of what would have been his best friends growing up.
He’s growing up an only child.
September is Childhood Cancer Awareness Month. For Ezra’s birthday, I’d love if you donate $1 a month through https://dollaramonth.club. Our friends at Team Parker for Life are donating $20 to Beat Nb for every person that joins – up to $50,000. And I mean… it’s $1. That’s no big deal.
I’ve been spending all my past couple weeks getting ready for our big gala, a week from today. Sat, Sept 8. There’s nearly a dozen families coming whose kids have had (or have) cancer. Half of those have lost their child. It weighs on me.
And we ARE making a difference. What we are doing to stop this from happening IS working. Our research chair, Dr Giselle Sholler, will also be at the event next week, sharing more of how it’s happening. Beating cancer today never changes the brokenness Robyn and I carry, but it adds joy.
“Despite everything, I thank you for your courage, and wish you children of your own someday. So you’ll know what it’s like to want to save them from the world.”
I don’t know if you’ve been watching 13 Reasons Why on Netflix, but it’s intense, and you should. It’s not for the faint of heart, and it’s not for kids necessarily (maybe teens?). It’s a very real look at the harshness of bullying, coming of age, depression, and finding our place in the world.
I finished up the second season on a plane this weekend coming back from San Diego, and the line above (that image is the scene it’s said in) hit me hard.
I was in San Diego to attend a fundraiser the Shaw family puts on. Their son, Parker, has beat neuroblastoma, in part through the DFMO trial we’re helping to fund. His family is helping too – they’ve donated over $125,000 to Beat Nb already, through their nonprofit Team Parker for Life. Much of that was matched, so the impact is even higher.
Over dinner, I watched Parker play with his two younger sisters, and listened to him chat confidently about lacrosse (he plays), hockey, and all sorts of things.
The night before, the Sherman family drove a couple hours from La Quinta to share a meal and a walk on the Del Mar beach with myself and the Mikulak family. Each of us had lost a child to neuroblastoma. Kristin and Rick (the Shermans) lost their daughter Riley Rose just this year. Andy and Mel (the Mikulaks) lost their son Max 5 minutes before Ezra, my son, was born. 5 minutes. And we lost Ezra 800 days later.
We shared our stories again, as we’ve each done hundreds of times. We talked about hospitals, and funerals, and how we learned to hook our kids up to catheters and syringes and feeding tubes and count meds and watch our kids break as we broke too.
And I thought about our courage.
How it drives us to want to save kids from the world. In our case, specifically from neuroblastoma.
Google “courage,” and it returns a definition of “strength in the face of pain or grief.” And isn’t that us? Isn’t that this ragtag group we’re building? A bunch of broken parents, falling apart at the same time as saying it out loud holds us together, screaming and weeping and standing mountain tall against this happening to someone else.
In the scene from the picture at the top of the post, that man’s daughter had been raped. And the teen he was speaking to had seen it happen, and was telling the police. He had much to lose by telling, because it would implicate himself in other things. But it was tearing him up not to do something about it, because he could, even though it would hurt. So he did.
I cried on the plane when the dad said that to him, remembering the Shermans, the Mikulaks, the Shaws, and all the families I interact with on a daily basis who are strong through pain and grief, choosing to pour their lives into beating neuroblastoma. It is working. We are seeing more stories like Parker’s, where yes, cancer is terrible and scary and we walk around with PTSD, but our kids are BEATING cancer where hope used to be absent.
Ask these parents, and they’ll say they’re not strong. We’ll say it hurts all the time, and we’re broken, and we feel the pull to just curl up in bed sometimes… that it’s not easy. But we ARE strong. Strength isn’t ease, it is endurance. It’s not that it doesn’t hurt, it’s that we choose to continue nonetheless. Brokenness is often close with strength. The one breeds the other. Muscles must be broken to build, fire tempers steel, and adversity builds character. Weakness teaches us humility, and to depend on each other. Community lessens anxiety, and increases ability, strength. WE are strong.
So to every parent who stands with us at Beat Nb, and all the other groups who’ve dedicated themselves to being God’s hands against a wrong in this world, I thank you for your courage.
this was a submission to a blog post asking about “mothering outside of the margins.” it wasn’t accepted for publication, but hey, it’s the internet, anyone can publish.
The act of becoming a mother, which involves nearly a year of wonderful discomfort, capped with certainly the most common great physical pain our bodies can know, is simple compared to mothering.
My wife Robyn and I spent a year or two trying to figure out how to answer the question “how many kids do you have?”
What normal people call polite conversation, the blandest of exploratory “oh, we’re talking to each other now” material, is explosive depth for us. Here’s how it goes, almost every time…
“Hello, good to meet you. You from Tampa?”
“We grew up in Seattle, but we’ve been here 12 years now, [insert cheesy joke about Florida being hot, Seattle being cooler, and us now being used to it.]”
“Yeah, 12 years. I’m one of the ones who actually thinks marriage is amazing, but of course is also work.”
And that’s where it always gets weird.
Eventually, we settled on “we’ve had three, we’ve lost two.” Six words that beg for explanation, yet give people the grace to step out if they have to (depending which person you are, you may be surprised at how many prefer to back out at that point with a feigned “oh, sorry to hear it.”)
It started rather picturesque, I suppose. My wife (the subject of this essay, which is about mothering, after all) came into a cell phone store I was working at, needing a phone. She was stuck in her contract, and I couldn’t get her a deal, but thought she was beautiful, so I offered to bring one of my “personal stock” to her work later that week. This was an obvious ploy to find out where she worked, and a week later we had our first date.
She was impressed that I tipped well. Robyn’s mom had been a waitress for several years after her dad died of cancer when she was 9 – teaching her from an early age the value of hard work, intimacy with grief, and life insurance. I somehow convinced her (and – with a little bit more difficulty – got her mother’s blessing) to move to Florida with me, where my family had moved the year before. After a year of living in Florida, we got married. We rented an apartment near some water, started getting used to the new place, and then Robyn was pregnant.
He was beautiful, Ezra was, and born absolutely healthy. Who Robyn was changed the moment she first held him, and I suspect the moment she first knew he was growing inside her. She has said often, “I was never sure what I wanted to be, and motherhood felt perfect.” Hilarious, sarcastic, witty, and with a unique ability to find people’s intention buried in their words, she had never felt quite fulfilled until she saw Ezra’s face. Held his hand. A year later, when they told us he had neuroblastoma cancer, the fierceness of her motherhood grew again.
That first year with Ezra, before we’d ever heard the word neuroblastoma, seems dreamy in my memories, almost like someone else lived it. I worked from home, and had no set hours. We’d stay up late with Ezra, wake up at 10 or 11 in the morning, and marveled the same as any parent as he discovered ants, our dog, dancing, and laughter. We refreshed our view of the world through his eyes, surrounded by friends, young and brilliantly naïve and happy in a way I hope everyone gets a chance to feel. Robyn had Ezra on a great schedule quickly, breastfed without any significant issues, and spent hours exploring the world with him, teaching him joy and curiosity. I felt honored to witness it, like when you haven’t really seen the stars for a long while, and finally get to a place where the city light’s don’t blot them out, and you say “oh – that’s what that should look like. Wow.”
Robyn took a pregnancy test the day Ezra started chemo. Our friend Lindsay brought it to her – I have no idea how she separated pregnancy signs from the shock of your firstborn being diagnosed with cancer and starting chemo, but she did, and she was right.
A few weeks later we found out it was twins.
Watching Robyn mother Ezra is one of the marvels I have witnessed. I am not (I hope) one of those bumbling fathers who can’t figure it out and simply leaves the children to the mom to raise. But I often felt like one while watching Robyn’s constant confidence, even while exhausted, even while they told us our son had a 60% chance at life, even while she carried two more sons as they told her this. I know, from many conversations with her, that she felt broken, scared, and weak as often as I did, but watching her mother Ezra you’d never have known this. She got him.
When they put her on hospitalized bed rest at 24 weeks with the twins, I could see how crushing it was for her. Ezra was getting radiation at the time, so I’d bring him to one hospital early in the morning, he’d get anesthesia and radiation, and when we finished I’d drive him over to another hospital, where Robyn was on bed rest. This lasted two weeks. The twins were born via emergency C-section at 26 weeks – Robyn’s second C-section, our 2nd and 3rd sons.
The smaller of the two, Price Nicholas, lived one week in the NICU before the complications of being born so early meant he was the first son we lost. Written on both her and mine arms is his birth weight; 1lb130z. I sang a song at his funeral, which Robyn helped me pick out.
Charley Adin, with many of the same issues, would spend 7 months in the NICU. The first time our family was all in the same building was at All Children’s Hospital in St Pete, FL. Charley, on the 6th floor in the NICU, Ezra on the 7th in the HemOnc (hematology oncology) unit getting stem cell transplant. We’d split our time between floors – between kids.
Robyn’s heart was full with Ezra. She knew him. I’ve seen lots of moms, and many who are great. Maybe everyone thinks their partner is a great mom… I don’t know, this isn’t about everyone. What I know is Robyn is a dragon mom – she is fierce. She is fire and strength. She loved Ezra fully, and just after he turned 2, when he died, a part of Robyn did too.
They told us in the NICU one visit, about Charley, “he’s going to come home soon, and that’s when it will really get hard.” That person had no idea our whole story, and Robyn simply broke into tears. He did come home, a month and a half before Ezra died, but we had already left to try and get Ezra on a clinical trial in Orlando. Charley’s first couple months of life were without us – Robyn’s mom Vivian lived in our Tampa home for that whole time, while Robyn and I fought for Ezra’s life 70 miles away. We were not victorious.
Although she eventually loved him first, it was hard for either of us to connect to Charley. I guess I’m not saying that right – we loved him, in the way of knowing he was ours and we must protect him and strive to connect to him… but neither of us could connect to him. Carrying our freshly gaping wound of losing Ezra, of 13 months of war against cancer, of failing, of crushing loss, Charley was more a collection of medical issues than a son. It took him months to smile. More months to laugh. While everyone else’s kids were learning to laugh, Charley was learning to breathe.
We had 24 hour nursing in the home for two years. Or somewhere toward the end of that it started lessening (18 hours… 12 hours…). Charley’s diagnosis is mild cerebral palsy – he’s also primarily fed through a G-tube, although now that he’s nearly 8, that’s starting to change. He has had a lifetime of checkups, syringes, surgeries, tubes and medications. And everywhere he goes, he hands out smiles to everyone who knows his name, which is everyone. Let’s be honest – he smiles at the ones who don’t know him too.
Mothering Charley was hard. It meant picking up grief and carrying it on her back, while knowing she felt very little of that same joy Ezra had brought toward Charley, yet also knowing it was there, and she had to push for it. Eventually, Robyn found that love for Charley. She found him. And she pulled me alongside, too, to find him.
Again, she is fierce, a dragon mom. Robyn has spent thousands of hours on phones, in offices, with doctors and therapists and educators and other advocates, pushing not only for Charley’s independence and understanding, but that of kids like him. She constantly makes sure I am active and included – part of her mothering being recognizing the value of close fathering.
I can see Robyn’s mothering in the way Charley approaches the world – confident of his timing (which is slower than many people’s), curious, and caring. He’ll have a 20 minute conversation about whether we should help the man we drove by who is homeless, full of insight grown adults don’t have about how we should help when we can. But if we walk by that person, he’ll spend that same amount of time sitting with them. He’ll introduce himself, ask questions, and share about himself. He is equally intrigued by a “typical” woman working security at the hospital as he is by the 13 year old in the wheelchair in the waiting room with him.
In Charley’s approach to life, Robyn’s mothering is tangible. She always says he’s magic, and years ago said “I can’t force him to my time. I have to slow down to his time, and be there in each moment.” She has taught me so much, and she is raising a boy who will become a man you’d like to know.
We have had three sons, and we have lost two. Robyn is, to this day, mother to each of them.
This is one of those weeks I’m feeling the weight of neuroblastoma.
A little guy named Miles died recently. More from his treatment than his cancer.
Kenna, a young lady we’ve been following nearly since she was diagnosed, is having a rough go right now, and needs all prayers on deck.
Every week I meet families who are walking through cancer with their kids like Robyn and I did with Ezra. I heard a song called “Heavy” which says “leave what’s heavy, what’s heavy behind.” In my job, what’s heavy is always here. The urgency, the weight, the gravitas… it is constant. It is inherent in what we are doing.
We put together events. We share photos which make you smile, and photos which make you cry, and try to gauge which gets people connected most. Of course there’s bunches of great needs, but it’s frustrating to know cute pics of puppies generally get more donations than a family fighting cancer alongside their kid. It’s not the same.
And it’s hard to pay attention to the other ambitions of life in these weeks, where the weight is so close I feel like the guy in a Facebook ad for one of those weighted blankets. But it’s not comforting – it’s exhausting. In these weeks, when you tell a joke my smile is slower. I find myself quieter in social situations.
I know the sadness isn’t where we live. What we DO is beat neuroblastoma (and other cancers now). We are part of a team of doctors, parents, scientists, and advocates who are literally curing cancer. We are standing at the place where kids used to die, sweating and shouting and working hard, and we are changing that reality. Where survival rates were ~60% when Ezra was diagnosed, kids on our trials see 85%+ survival. Where relapse rates were single digits, they’ve increased nearly tenfold on trials we’re helping make happen.
But kids still die. When I fell short with previous companies, we’d miss a deadline, or someone would have a lame experience buying something. Where we fall short today, families live with sons and daughters gone. Kids die.
The entire research consortium we’ve helped to build can run with $2.5m a year. The PEOPLE in this community are the ones who do things. Who you might not have heard of, because they’re heads down beating cancer. They’re the ones you’d never hear say “I don’t know, I’ve been looking for something with more purpose.”
I’m feeling the weight this week. Or maybe this month. It’s a tightness in my shoulders, or a “huh?” when you were talking to me a little bit and I missed it. It’s my brows furrowing as a resting state. Sometimes the urgency is energizing, but in this little moment, it’s just heavy.