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.

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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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4 years

Right now, four years ago, I just wanted sleep. Ezra died just after 2am, and we left the hospital by 4. We were in our bed in Tampa by 6. Eight months before, we’d lost Price. Charley had come home from 7 months in the NICU just 30 days before Ezra died. We were tired.

Robyn and I had no clue how to be. We still don’t, i guess. We build our lives because hey, time’s not stopping. We work to change Ezra’s story for the next family. We answer the “how many kids do you have?” question with sad smiles. There is no “getting better” – there is only learning to seek beauty through a stained window of loss.

Robyn’s older brother David and sister in law Angela got into town last night from California. David is playing with my dad and brother in a golf tournament Brighthouse Enterprise is throwing to benefit Because of Ezra Tuesday. We’re honored to see incredible partners like Brighthouse Enterprise furthering a cure for childhood cancer with Ezra’s name attached in some small way. Thank you.

We stayed up late talking about life and how we’re often forced to be strong purely because there is no other option. We talked about how I don’t believe “everything happens for a reason.” I know people mean well when they say it, but it’s simply not true. Ezra didn’t need to die in order for the many good things since then to happen, nor did any of the children of so many friends we’ve made who have felt the horrible sting of childhood cancer. We choose not to be bitter, and we choose to turn this constant awareness of pain into passion to help others. And believe me, that choice has to be made every day. God makes beauty from ashes, yes, but He doesn’t have to burn something to the ground to cause the beauty.

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We are strong. We have been made resilient through hardship, and our intimacy with tragedy has tempered us. Today, we will visit both our sons’ graves. They lie under a bell tower in a field we often see deer in. They are right next to each other, and although we’ve not been able to find the strength to be the kind of parents who visit a gravesite often, when we do it is good. We’ve been there alone and together, with books and with a bottle of champagne, with tears and with laughter. Still, I know granite and bones are just a reminder of our sons; they are no longer here. There are pieces of them both left all over our hearts and our lives, and we will never let that change.

Ezra’s 6th Birthday

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6 years ago tomorrow, Robyn and I were proud parents for the first time, amazed and bright-eyed to welcome Ezra into our lives. 4 years ago today, Ezra’s neuroblastoma relapsed.

Our friend Kalisha posted a picture of her daughter, realizing she’s a couple months older now than Ezra was when he died. She said “children should be dancing in water sprays and not fighting cancer in hospitals… it’s about providing a way for kids to continue to dance and bring their light and grow up.” We agree. It’s hard to know Ezra will never do that here again.

The truth is, our story isn’t uncommon. Over the past 4 years, we’ve met so many families who know our story intimately, because they’re living it. We’ve laughed and cried with them, shared their stories, and worked hard with you to fund innovative research which is affecting these families – our friends – today.

Robyn and I are personally inviting you to come and celebrate Ezra’s life, and all the kids who are fighting or have fought childhood cancer, at Karaoke for the Kure September 12th in Tampa. It’s a fun evening, with a live band playing karaoke, an open bar (family friendly), and the knowledge we’re affecting change. Ticket prices will be $60 this weekend in honor of Ezra’s 6th birthday, and go back to regular price on Monday.

We miss Ezra every day. Both Robyn and I feel like the work we do through Because of Ezra is a way to continue to be his parents. Thank you so much for all of you standing by us these years – with every child and family we meet battling cancer today, our will is hardened and our hearts are softened.

Happy birthday, Ezra!

Get Tickets to the Party

three years

ezra

When I was young, my parents always told me I could do anything. In 31 years, I have embraced much of life. I have felt the fullness of our desire to know and be known, I have marveled at the ways we express our journeys, and I have spent more time than I am told is healthy enjoying the many ways we cook, eat, and drink. I have struggled in my understandings of purpose, faith, and tragedy. And when I say struggle, I am not speaking so much about a problem; more a constant attention. These things are on my mind often – drawing my reflection, clamoring for definition, and at the same time moving me, I think, toward a realization I can never fully answer them. What is faith if it is proven?

Ezra had his first round of chemo before he was able to hold a conversation. He learned to walk while being treated on a national protocol for neuroblastoma, consisting of chemotherapy poisons being run through his body in the hope they would kill the cancer before they killed the rest of him. Of radiating his bones and nervous system to do the same. Of intimately tracking his health to bring him just to the highest strength necessary to be able to do the whole cycle again. And he smiled and laughed through all of it.

Now, three years to the day after he died, most of the tears I cry are for the moments he will never know. I still have a hard time watching a father play catch with a son. Ezra will never taste pasta, or feel small while marveling at the Grand Canyon, or kiss a girl. He’ll never read Tolkien, or Asimov (I love sci-fi), or CS Lewis, or even Rowling. He’ll never drive a car, or get lost while doing so, or run out of gas and have to call me to come help. He’ll never know the sting of embarrassment, or the joy of seeing a baby born. Our world is one he’ll never know.

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Ezra taught me a lot more than I ever got the chance to teach him. He was sweet, and kind. He laughed a lot. Every single morning we were home, and many in the hospital, the first thing our family did was turn on his favorite children’s CD, and dance in the living room for half an hour or more. Ezra’s head was always bobbing around to music when it was playing – in the car, in the restaurant, in the hospital.

He taught me we will hurt, and we have a choice how we react. He showed me tragedy is brutal and unfair, and there is great worth in the relationships we make with each other. Ezra taught me we should let go of ourselves often to hold on to someone else. Strength can be shared, and heartache can be too.

I do not think there was a reason for his death. I do not think there was a reason for his sickness. God can find beauty in ashes, and I know of hundreds of stories since Ezra’s death of people whose lives have been touched by his. I will never say these things were reasons for my son to die. I will always cherish that his life has caused such goodness in others.

The cliché is true – life is short. There’s no reason to wait for something to happen – we can simply make it happen. I do believe Ezra’s name will be attached in some small part to a cure for neuroblastoma, which will mean thousands of families who will never have to share our particular story of tragedy. Like the story of the boy throwing beached starfish back into the water who was asked why when he could never throw them all back in – “it matters to this one.”

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There is an amazing girl we know and love, who Ezra’s story meant a lot to, and who has done a lot in the pediatric cancer world since his death. Just recently, she mentioned offhand she’d be visiting his grave on his birthday, and wanted to make sure that was ok with us (she didn’t want to break the solitude if we were planning on being there too). We told her of course she could visit, and started to give her directions. “Oh, I know where it is. I visit every Tuesday, and just bring some flowers or a toy or sit and think a bit. It’s my quiet time during the week.” It’d been 2 and a half years since he died.

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At least 5 people we know are in medical school focusing on a career in pediatric oncology because of Ezra’s story, including Robyn’s brother.

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We have met family after family who have been affected by neuroblastoma, and shared their stories as well. Their names are ones we will never forget; people we love and admire. We’ve built great friendships, shared tears and laughs, and held their kids’ hands. On what would have been Ezra’s fifth birthday, at our Karaoke for the Kure event, one of these friends came whose daughter was treated with Ezra. She is now in first grade, and a beautiful girl!

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Our incredible friends and family have cried with us, picked us up out of bed when we’d been there too long, laughed with us, danced with us, sat quietly with us, shared beautiful moments with us, prayed with us, and stood by us when we were not giving back nearly as much as they were giving. As seasons change, I hope very much we can be those same pillars to them.

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By the end of this year, we’ll have given over $300,000 to fund research into a cure for neuroblastoma because of the many, many amazing people who have supported Because of Ezra and our continuation of Ezra’s fight.

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Robyn and I have changed a lot in the 3 years since Ezra died. One of our strongest commitments to each other has been to never become bitter. It is so easy to focus on your pain enough to make everyone else’s not matter. This morning we shared our story with a couple from Canada we met, and they asked “how do you find such strength with that much sadness?” The answer is a mixture of amazing friendships, faith, and commitment to each other. Strength is hard to feel – the strongest people we know say the same things we always do “I don’t feel strong. I just know who I can rest on when I am too weak to do anything else.”

Ezra – I believe we will see you again one day. It doesn’t change my hurt at all, and your mom and I miss you all the time. I hope you’re as proud of us as we always are of you.

We love you.