chapter next

Almost since the day Ezra died – over a decade ago – I have been at the helm of a nonprofit focused on changing our story for the next family.

As 2022 begins, I will shift from staff to a board role at the Beat Childhood Cancer Foundation.

I leave my post as Executive Director on friendly terms, proud of what we have built so far these past 11 years, and glad to continue my involvement through a seat on the board.

Our team has grown, and I rest in an assuredness we will continue to make astounding forward motion in our great aim to make sure every family hears “we know how to beat this” when their child is diagnosed with cancer.

I am writing from a creaky chair in a cabin in the Blue Ridge Mountains, tiny squares of window screen adding texture to my view of misty mountains I wish I’d been able to take Ezra hiking in.

It is quiet.

Most of the crew we came with are out hiking in the soft gray rain, and I have time to sit and write this post I’ve been putting off.

That year Ezra died, Charley’s twin Price died as well.

All my life, I’ve been good at things. Stuff just made sense to me; I could pour effort into challenges and solve them.

But my sons died, and I broke alongside the love of my life, her brokenness magnifying, for me, the shocking STOP to Ezra and Price. I began my exploration of and intimacy with tragedy.

Many pieces of Robyn and I went into starting what we first called Because of Ezra. Surely I could pour effort in and solve this – if not for my sons, then for yours. I could connect the right people… find the places to yell, the places to finesse, see the weakness in our enemy, demystify the complexities… build and build and build the dollars and passion and effort to firehose strength and figure out where to point it all.

Suddenly none of the things made sense, and I had to find a way to bring some sense of understanding back. I count that as naiveté at best now, probably closer to pride or control, but it held mightily in my motivation to continue the fight we were 13 months into already. Ezra’s fight, and ours too.

We could remember Ezra, and we could spend time with people who felt the things we felt and know we weren’t alone in this shattering grief. Robyn talks about the honor and deep gratefulness she felt to all who worked to make possible the advancements in medicine that were available to Ezra. We could be a part of that for other families, pushing results even farther. Robyn could continue to be Ezra’s mom.

Thanks to a brilliant cast I am impressed to know, we have done a lot of this. There is urgent work to be done – kids are dying still – but the reality of treating childhood cancer is better right now than it ever has been. Time has cautioned me toward humility, but I am deeply proud of being a part of these results.

Still, it is wearying work. I am tired, and the unflinching proximity to hard things weighs on me.

Just writing that sentence makes me want to delete it, to be stronger, to carry a burden because it deserves to be carried.

Comfort has never been my highest priority, and the pride I fight against sings strong when I consider my ability to Keep On. But idolizing hustle comes at a cost, and I am looking forward to lightness and time. To focusing on Charley and his needs. To reading, and hobbies, and to making Robyn laugh until her sides hurt. To celebrating her and praising her like I should. To dates and trips and weeks going by with nothing much going on.

That’s less about a job, and more about my approach to a job which carries the weight of our son, and of so many other sons and daughters.

In short, I suppose… it is time.

To my friends and colleagues in the childhood cancer world – I’m not going anywhere. Reach me on any of the ways you have before – they all still work. I remain on the board, and am excited about all the irons in all the fires. Getting drugs FDA approved. Precision medicine. Technology’s exponential role in how we understand and beat cancer. The storytelling we believe in strongly. It is all STILL working, and we are a bold crew.

To my friends outside the childhood cancer world, hello. Text me. Let’s grab a plate and a glass.

On Robyn and I’s first date, she said she wanted to open a coffee shop.

In March of 2020, she did – a drive-thru only concept called White Duck Espresso, in New Port Richey, FL. She’s got two more leases signed – we expect to have 3 locations open by summer.

It’s been the best part of the pandemic – watching Robyn’s eyes light up as she’s grown White Duck to a truly magical place which is more than caffeinated drinks on the go. Getting to know the White Duck crew, who are unmatched and our favorite part of White Duck. It’s a family of creative and caring people, already with a cult following (if I can be so bold) of people who leave reviews saying things like “I just came by White Duck today because I had a tough day, and I knew the baristas would make it better.”

I am looking forward to my next decade of work being in a supportive role of Robyn while she grows her dream business. She is really good at it, she takes my breath away to this day, and I just can’t stop smiling.

melancholy

Maybe it’s the pandemic.

Maybe it’s Willie Nelson singing “Just Breathe” in my headphones (and hearing Eddie Vedder’s voice in my mind at the same time).

But I am feeling melancholic. “A feeling of pensive sadness,” says Google when I type the word into the computer I sit at for hours and hours every day this past year, 30 inches from fresh air. When I copy and paste “pensive” back in for further clarity, I’m shown “involving or reflecting in deep serious thought.”

To add to the mood, Spotify queues up “The Weight” by The Band… and now I’m just listing songs in a blog post.

I’ve got cabin fever, but I haven’t been as cooped up as others have been the past year. Florida is good-naturedly mocked (sometimes with aggression, or maybe just a dumbfounded rolling of the eyes) for the level of societal and economic openness we’ve had since March of 2020.

So we go to restaurants, we go to parks, we go to the grocery store and Target. We finally opened the coffee shop Robyn has (well, both of us have) been dreaming of for years, and it’s brilliant and exciting and the people are the kind who you feel proud to know.

I’ve been able to travel some for work, which I find energizing. A few weeks over multiple trips trekking the mountains and deserts and coasts of America following a man named Peter Halper who ran across the country as a fundraiser to benefit Beat Childhood Cancer. Visits to Charlotte to see the new lab where the clinical trials and research we fund around beating cancer for kids is happening. Incredible work which, if I stand back and think about, is lifetime-achievement level, and I am proud to be involved in. This year I’ve met wonderful people, who’ve done nifty things, and had conversations over dinners and meetings which were both mentally engaging and effective.

The world just feels smaller lately.

For a decade most of what I do has boiled down to meeting and being with people. Designing projects, listening to and learning how people are, sharing depth of emotion and questioning how we all handle friendship and grief and purpose and figuring out what to do with, I guess as The Band titled their song – The Weight.

Maybe what I do is just fundraising, but it feels like storytelling with a mission, and building real friendships.

Society hasn’t done that much this past year. We don’t get together, meet each other, dream and chat and whine and maybe even change a few things that are bad into things that are better. Or I guess, when we do, it’s more nervously, smaller… or with defiance. Whatever it’s been, there’s a thread of anxiety and anger and helplessness through it all, and it’s taxing. I know this feeling from when Ezra went through treatment for cancer, and for 13 months there was this giant unresolved question… will my son be ok.

The uncertainty we face now is smaller, at least for me. It is not my son’s life on the line. But our mental well-being, the way we structure society… that’s all been upended. It’s weird to be nervous around people. It’s weird for people who aren’t to have an inherent rebellious middle finger suggested in the action (the lady with no mask in the grocery store starting a conversation with the person next to her. Or I mean, geez, the lady with no mask in the grocery store).

I’m not advocating a stance – we wear masks and take precautions and for the most part do what we can to stymie COVID-19 (my career is in funding scientific research to make things better for kids right now). I’m saying every interaction feels tense; a low level of stress is in so much of human contact lately. I wonder if this is what McCarthyism felt like, always wondering if the person in front of you is somehow dangerous or “other.” I wonder at the damage that does. Maybe this is how every marginalized group feels, always.

I don’t think it’s really COVID that’s on my mind, but it’s a nice common place that maybe connects my rambling to what’s on your mind, and so maybe it’s a good way to express it. The close people to me are in hard spots of late, and my work by its nature has me surrounded by people for whom tragedy is the common place we share.

We had a donation the other day, and like I always do, I emailed back the person and asked if I could be so bold as to ask how they found Beat Childhood Cancer… why they care. The woman emailed me back two weeks later and said her 2 year old son had died from cancer, just last month. And like I always do, I stared at the screen for minutes, making sure I felt her loss. The quiet sadness, the ferocious, screaming sadness, the anger, the numbness, none of which will ever bring her son back to her here, today. Feeling the loss of our sons. Missing Ezra, missing people. Feeling the weight.

And Willie Nelson started singing “Just Breathe” in my headphones.

sleeping

you and I, fast asleep in some chair
that’s the photos she’d take
little ways that she cared

and now, sun is warming my back
as I sit by your grave
watching deer down the path

she, she is broken in half
we cannot put this back
you have been ripped away

lioness, I will break with your heart;
lie awake in the dark
with these pictures of sleeping

in between moments

I’ve been stuck on this for the last week. 

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. 

Fall in love with the lack of the hook.

mothering

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.]”

“Ha. Married?”

“Yeah, 12 years. I’m one of the ones who actually thinks marriage is amazing, but of course is also work.”

“Kids?”

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.

the weight

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.

grief

Grief from loss.

It is a terrible warm blanket, seducing you to set things aside, settle in, and relax in the comfort of sadness. Grief dulls passion, and blurs the clarity of a sun-lit ideascape.

Grief is noticing over and again the permanent absence of something which was beautiful, and each time newly feeling the ache of knowing that can even happen. Grief is those moments when your mouth smiles, but your eyes do not.

You don’t move past deep grief from loss. It is not a chapter; it is a thread of the story’s fabric. Grief is the color of the ink on the page – less content, more substance. Grief is a gentle sadness unfairly wed to joy through memory, sometimes raging from its quiet confidence into debilitating largeness.

Living with grief necessitates sunlight. Perhaps not the literal rays of the sun, although that too, but clarity of vision toward the achy strangeness of loss. A vocalization of your place in it at this moment, and permission for God and your people to be in it with you.

Grief brings brokenness, but brokenness does not carry the weakness we ascribe to it. There is humility in brokenness, and that humility brings a shift in perspective. A deeper searching, a greater desire for meaningful relationship, a stronger attention toward those of us who carry brokenness. I also feel a pull in this brokenness, toward tranquility and wisdom over ambition and vogue. I fail at this, and second-guess myself, but undeservingly rest in grace and keep after it.

Ecclesiastes 4:6 Better one handful with tranquillity than two handfuls with toil and chasing after the wind.

Ecclesiastes 9:17 The quiet words of the wise are more to be heeded than the shouts of a ruler of fools. 18 Wisdom is better than weapons of war, but one sinner destroys much good.

Maybe grief has no will, and should not be given the hat-tip of personification. Maybe grief is only the discovering of a truth which is not easy: that loss is a natural destination of possession, of nearness. That life is fragile, and not promised. That “fair” is fable, or more likely simply isn’t what our immature minds told us it meant; what our comfort begs us to wish it means.

I am told we will see our children again. I wish this gave me more peace. It gives me some. It’s hard to visualize what it means. Still – whatever Heaven is like, it is not the same as here, and we have lost them here. We have lost that beautiful moment of decades exploring this odd and magical world together, of crying and laughing and learning and falling apart. We cannot have those things back, and my God, how I long for them.

scarred lion’s skin

Tomorrow is Robyn and I’s ten year wedding anniversary. But I won’t post tomorrow, because I’m shutting my phone off for the week to vacation with her.

Always, I am fiercely aware of the families who are, today, in the same place we were when Ezra’s life was a question mark for us. And so, as always (seriously, thank you all for all your support), I’ll mention a way you can help to change our story for another family – I’m $800 short of my $2,500 goal for my first fundraiser under Because of Ezra’s new name (Beat Nb). I’m running 7 miles in Boston with 9,000 other people at Falmouth Road Race.
The day I met Robyn, she walked into a Smart Wireless store in the Everett Mall with her mom, wearing a rainbow belt and short hair. Robyn was beautiful, and she was odd, in a way I found maddeningly appealing. I was intrigued.
For our first date, we went to The Old Spaghetti Factory, and she was impressed I tipped well. Robyn had lost her dad at 9 to cancer, and her mom, Vivian, had been a waitress most of her life. Now, her mom is my mother in law, and I love her. She keeps it real, although it’s hard for me to see she’s been getting heavily involved in listening to country music lately.

Neither of us asked the other out – Robyn handed me her phone when I came to see her the first time after I met her, and on it was her friend Leah who asked me to come on a double date with them. Now, after a decade in different cities, Leah lives in St Pete with her husband Justin and their new baby, Nova.

Robyn and I had only known each other a matter of months when I asked her to move to Tampa with me, as I’d already been planning to when I met her, but had called my folks and said “hold on, I met a girl.” She came with me, and moved into an apartment down the street, and I moved back in with my folks for the 4th time, at 23 years old. She happily cried when we were on a boat one day in St Pete and I asked her to be my wife.

At our wedding in Marysville shortly after, I played her a song I’d written for her (we’d met some friends in Tampa, but most of our people were still Seattle folk). We got an apartment in Tampa; Ezra’s first home. I was leading worship at Grace Family Church Van Dyke at the time, and through Ezra’s entire cancer diagnosis, treatment, and death, our church family was close and kind to us.

We were given three sons, two died in 2010. A fourth came into our home but has since left, although he remains our son.

Over the years, we’ve driven across the country, shared meals across the world, met many people we love, and I strongly believe we’ve been a part of saving many children’s lives. There’s a thread that ties tightly to every story I’ve felt these past ten years, and that thread is Robyn.

Love is a choice, we’re told. I had no idea what that meant the first time I said the words to her, at the base of the Snoqualmie Waterfalls. I knew I cared for her, and I knew she was a beauty, and I knew this was fun. But I had no idea what it feels like to experience tragedy. I had no idea the loss she would face, holding me tight, the two days I can remember, burned in my mind in perfect clarity as long as I live, as we held our sons and knew they were here no longer. Or the way it feels to break apart, in rushing landslides of loss and in glacial, terrible hurt and question while you try to make since of the thing that has happened. Luckily, I suppose, boredom and monotony have never been our crosses to bear.

There is no “fair,” as we know it, and our life hasn’t been “fair.” What has been ripped from my wife is not right, and I have cried nearly as many tears as she has, seeing the way it has broken her.

She is mine. I choose to love her, and she me, and it is often easy, and often not. I am selfish and foolish. I am broken. She encourages me when I am doubtful or weary. Sometimes, we have both been unable to hold each other up, and so we only hold on to each other, knowing there is strength found in weakness, knowing God holds us when we can’t hold each other. In the worst times in our minds, at least hoping that’s the case.

Outside right now, there’s a Florida summer storm battering down on our home. But inside, I can hear Robyn’s voice echoing as she and Leah laugh. And I feel the pressure on my eyes and blurry edges of vision as tears don’t quite appear, hoping our hearts are the inside of this home and our scarred lion’s skin is the exterior. We have been battered, and we have stood, bowed like a tree to the hurricane in more sense than one.

I look at or think of Robyn and smile. I am proud of the woman she is. I am honored to know she’s proud of the man I am. I know her weaknesses, and she knows mine. We have seen our brokenness and chosen to love deeper in those places, pushing bitterness from our minds, chasing away that jaded feeling that gnaws at us the more we learn of the world. Our son is stubborn and joyful, sharing my lighthearted approach to many things, and her fierce tenacity. Robyn feels guilty when she thinks of herself first (although I encourage her, and help, to create space where that’s precisely what she does).

She is rare, and beautiful, and a bit scary, and I am drawn to her now more than I ever have been. 10 years is a beginning. I love you Robyn Matthews – let’s do some more.

shaky; rest

if you read to the end of this post, you get two bonuses… an original song of mine, and a worship cover

I haven’t written as much lately. We’ve had a shaky last 18 months, and I’ve felt… well, unrested.

But not in an “I’m really tired” way. It’s been more of an anxiousness.

When I was a teenager and in my early 20s, I had this misplaced pride in the “fact” I never got stressed. Of course it wasn’t true, but as I look back at it, there was something to it. I had an average middle class set of issues, and of course I felt them all with the depth a young musician does. Since I was 15 years old, though, I’ve rested in my faith in God. Circumstances sometimes sucked, but I believed, deeply, I was loved by God. At the core of me, I knew joy and peace.

And I grew up, and my sons died. Two of them, in one year, 2010. I married a beautiful and ferociously caring woman, I watched her find herself as a mother, and I watched that ripped from her hands while neither of us could do a thing about it.

So my questions got bigger and scarier, and affected who I was in a deeper way. For a couple years, I just drifted, I think stunned that this had happened. Charley was hooked up to a bunch of tubes for the first year of his life, and it was hard for me to connect to him emotionally even the year after that.

I never lost my anchor of this core thought of God being real, and us all being loved by Him, personally, including me. I’m sure the line attaching me to that anchor grew taut, though, as I floated around. An anchored boat can still drift; just not as far.

The last 18 months. We’d gotten to a point we were starting to feel we could be happy again, and we were excited, in 2013 and 2014. We adopted Charles, and he joined us in October of 2014. But it was a mess. Charles had a hard and unfair life. And a lot of that came out when he was in our home, and not in a therapeutic, “let’s work out our crap” kind of way. It tore all of us up even more, and neither Charles nor ourselves ever felt peace at home. Since June of last year, he’s been in a residential treatment facility. I talk to him often, and visited him recently.

Getting to the point where Charles left was hell on all of us. Home wasn’t peaceful. It was tense, dangerous, and we were all dialed to 11 all the time. Making the decision to have Charles move where he is now was hard, but absolutely the right decision.

There was some PTSD involved there, and we were… shaky. Shaken? Our foundation felt less strong, and we were tired. Through that, we started a new business, which didn’t really go in the direction we hoped. Life felt shaky. People told us we were strong, heroes, inspirational, but we were broken and hurting. I noticed both Robyn and I were constantly anxious and tense. Because we were so physically consumed by everything going on, we felt we’d lost much of our community.

To today. Or, this week. I’ve been thinking about that confidence I felt as a younger man, in God’s love. The rest I felt in knowing that. In Matthew 11:28, we’re told “Come to me, all you who are weary and burdened, and I will give you rest.” I read a great talk by Charles Spurgeon on this passage. He mentions this rest is a rest of many things – rest of the conscience, rest of the heart, rest of the soul, rest of the entire being. I’d forgotten this, or at least I’d left that rest. I’d allowed the core of me to be unrested, and I don’t mean in the positive way that drives you to change terrible or unjust things. I mean in the way that makes you feel unsure of your direction, of whether the heart of it all is good, and of whether the point of it all carries worth.

I wrote the song below in 2008, with some help from Larry Wiezycki. This week, I’ve been listening to it and working to restore a core of rest. I still am incensed by injustice – I hope more now than ever before. I am even more passionate about the work we are doing, and driven to push it further and faster. But I used to do all that centered in peace, sure of my direction, precise and driven. I’m re-building that.

Today, I found a video from shortly after Ezra died, of me singing at church with a vulnerable and long intro at the beginning. It’s below. I’d encourage you to watch it, at least the talk. I meant the words I said, of God being our strength and joy. Of finding rest in the fact He calls us sons and daughters. There’s a lot of peace there as you research it.

I don’t understand why my sons died. I don’t understand why my wife must carry that, in a way even deeper than I do. Or why our fourth son is forced to carry the weight he does, and the effects it had on all of us. But I want to remain in that peace that I had for so long, and I need to say that. I need to put time into it, and I need to point my family to that same place.

I am more skeptical of so much now that I have seen more of the tragedy in the world, and how terribly all of us broken people treat each other. But I’d like to be less jaded. I’d like to keep seeing that you’re just like me, wanting peace and rest, and wanting to stand against anything that takes those away from anyone. I’d like to be more genuine and dogged in my search of God’s heart. I’d like to be more intentional again about building our community. None of this is good without caring, passionate people around you. And I think, like the Great Gatsby, I’d like to be known as the single most hopeful person you’ve ever met. I’m tired of anything else.

giving thanks

for 800 days
for the 1480 since
for patience when my questions aren’t easy
for a God who pays attention regardless
for Robyn, who is fierce, who is home, who knows me
for sons here and for sons gone
for family
for friends who’ve become family
for health
for a clear sky with a bite in the air
for gray days when I’m stuck in my mind
for the knowledge of tragedy
for the strength to help today
for differences which remind me to learn
for mountains, and the knowledge I am small
for the smile in Robyn’s eyes when she sees me
for safe places when I am weak
for people to know triumph with
for growth
for grace
for hope

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