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.

father’s day

I miss Ezra every day.

Yesterday was Father’s Day. It was a good day for me. It was also a heavy one. I woke up yesterday to find out Tessa had died – this young lady battling neuroblastoma who I’d met only once, but whose approach to life moves me. I saw in her something I knew in Ezra – a zesty snap toward smiling, and a wisdom she shouldn’t need to have yet. To all the fathers who have holes in their heart, and today especially to Bobby Prothero, I am with you.

And we are here. Still. Insensibly, we bumble on while everything else does. I know, logically, it matters that we work to change what we can. That Beat Nb is working to stop kids from dying. That the dinners and phone calls and laughter in my own home work to prove there is love within loss. “Pain and joy can coexist.”

I know it’s been this way forever. I’m not naive enough to posture any of our current struggle (“our” me or “our” all of us) as unique. Still, it’s not right, and it weighs on me. In a broken world, we are broken people.

We make a difference. It can never, WILL never be fast enough. I don’t know how to wrap my head around that. It is war, and the enemy is cancer. The “cost” we pay to one day (I hope sooner than we think) beat cancer is too high. It is my son, Ezra. It is Tessa. It is Brooke. Max. Emma. Melina. Ronan. Alex. Lola. Among the many, many names I will never forget.

And more and more names of kids BEATING cancer. Sofia. Rea. Parker. Lily-Mae. Isaiah. Anthony. John. Cannon. Not just lists of names – all of these kids are stories I know and can tell well. This reality of so many beating cancer just wasn’t the case when Ezra was diagnosed. Oh sure, it happened often enough. But not with the frequency it does now. Sweet evidence we are beating neuroblastoma.

I’ll never be ok with how much it has cost.

my son, Ezra

My son, Ezra.
——
I know life isn’t fair. I’m a grown up now, and I get it. Things happen, and sometimes they are with reason, and sometimes they are without. My son, Ezra, died seven years ago after fighting neuroblastoma cancer for 13 months. When I watch this video, I am broken over and again by the smallness of the moment, the casual magnificence. Oh, for another moment like that with him…

I carry that soul-screaming loss every day. I am a hopeful man, and for years after Ezra died I struggled to hold that hope. It wandered from me, tether-snapped back, and hid in the cracks in my bones left by the pain of loss. But I am a hopeful man.

Grief isn’t a season. Grief is a separate and simultaneous piece of your heart. It will not – should not – go away, and we simply continue. It is easy, and in some sad way comforting, to let grief overcome hope. I’m not sure if I’m saying that right… maybe to… rest in grief? Every moment I have a decision to carry or to be consumed by it. Not in an “unhealthy” way of not “moving through” something… I guess I’m saying simply this: you can not forget the child you’ve lost, and must still choose how to approach the world.

But I am a hopeful man. And I am surrounded by many hopeful people – who’ve known this icy clenched hand around their heart, who’ve stayed up crying for their sons and daughters, who’ve lost, who’ve fought, who’ve beaten cancer.

We may occasionally complain, but if we do it is because we choose to change this truth of childhood cancer. We may take days off because the closeness and weight of it all is too overwhelming that day. But usually – mostly – we are beating neuroblastoma.

Life is not fair. And terrible things sometimes happen for no reason. But WE choose to take tragedy as tempering. WE choose to stand when the shaking is furious, and to build practical and effective hope. We do this through research and clinical trials, understanding intimately the very thing which ripped our children from us, a terrible respect for cancer’s maliciousness.

600 kids. 30 hospitals. 19 clinical trials. 10 years. And so very many families who know a different truth than the one of loss my family (and many others) have, because of our work. I speak with depth of emotion because you cannot tell these stories without it.

Thank you for being a part of curing cancer for kids. #WEWillBeatNb

Because of Ezra…

A lot of emotion today in people’s posts. Yesterday was hard, but not because of the election. It was hard because it marked 6 years since we lost Ezra. This morning I thought of his funeral, and the table of notecards we set out asking people to complete the sentence “Because of Ezra…”

We kept all those notecards. They are in a wooden box in our home. This morning, as everyone was sharing anger, fear, hope, happiness, silence, and many other things, I took that box out and looked through it. I was struck and honored by the impact our Ezra’s short 2 years of life had.

So I put a bunch of the quotes up on a website at http://ezramatthews.com/. Maybe take a peek if you’re stuck trying to make sense of something difficult, and if you’re feeling hopeful too. Everything each of us does has impact. Inspire good. Know that no one else decides how you care for those around you except yourself.

tomorrow is Karaoke for the Kure (video inside!)

Every time I see a kid like Sofia, beating neuroblastoma because of work we’re doing, my heart breaks in so many ways – good too. 6 years after Ezra died, I’m now friends with many people whose kids had or are beating neuroblastoma. And lots have lost kids, like Robyn and I. But the stories of kids beating neuroblastoma ARE becoming more normal. In just 6 years, we are seeing a difference.

I’ve said before – it’s too slow. The stakes are too high. I know too many kids who aren’t here anymore, and the huge smiles we have with each success are coupled with sad eyes knowing so many kids who weren’t saved. Still, we push forward because that’s not good enough. And it IS changing.

Robyn and I are just two people of the passionate and EFFECTIVE group we’re surrounded by in beating this cancer. I could mention 50 people right now who are either DOING the actual research, whose kids are on our trials, who are helping to fund research, raising awareness, or all of the above. We are strengthened and encouraged by the group we are a part of.

Please come to Karaoke for the Kure – Tampa tomorrow. I know it’s yet another event, and it costs money, and there’s other stuff going on, and blah blah blah. But I say this with full confidence: kids are alive today because of Beat Nb and the NMTRC’s work. So come celebrate what we’re doing, and be a part of the change we’re affecting. There’s work left to do.

https://beatnb.org/k/tampa/ for tickets.

I’ve still got a few tickets left which are sponsored (read: free for you), and some discount codes if the price is an issue. But it’s a charity event – full price is just as appreciated. 😉 Regardless, I’d love to see you.

the day I became a dad

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I was 26 years old when we had our first son. Facebook is terribly wonderful for me, as we can look back with such detail. At 5:25am, we were at the hospital, for what wound up being a false alarm. At 12:42pm, we were timing contractions. By 1:52pm, we were back at the hospital. And at 11:10pm, less than an hour before September 1st, Ezra was born.

The next day, I posted this:

I’ve cried every time I read those words while writing this post this morning.

August 31st is always a strange day for me. Our friends Andy and Melissa Mikulak, who are now part of Beat Nb with us, lost their son Max to neuroblastoma less than 2.5 hours before Ezra was born. We love you guys.

The day before Ezra’s second birthday is when we found out Ezra had relapsed. And of course, September 1st marks the beginning of Childhood Cancer Awareness Month. So, all the feels right now, every year.

I remember singing at church one day not too long after Ezra was born, and sharing a realization I’ve heard from many new fathers since then. The way a father loves a son. The depth that feeling carries. Watching it change my relationship with God. You can explain in words the ache to see your child thrive, the joy in watching them do even the most absolutely normal things, more fully than ever understanding what love is, finding this “I’ll protect you at all costs” feeling which seems as much a part of you as the blood in your veins. But it doesn’t do it justice. You cannot grasp the feeling of being a parent without having a kid. It’s wonderfully exhausting.

You watch your child, and see how innocent, how curious, how amazed they are by the simplest things. A piece of you which may have been jaded as you’ve come to know the world’s ways brightens and flourishes again. My dad said it this way:

You know, I never had a chance to teach him to shoot a free throw. Never had a chance to teach him to throw a curveball. Never taught him to read the grain on a 14 foot putt, but I can’t do that anyway, so…

But he taught me. He taught me to love again, he taught me to live again, he taught me to focus on the amazing little things in life. Like a stick whipping into a pile of leaves or an ant in the crack of a sidewalk. Or watermelon. Vanilla ice cream. He taught me to laugh again, get back in touch with the humanity that I had begun to miss in my life.

And then to have it ripped away.

It is constant, still, my pain of loss. Sometimes a deep ache, sometimes sharply fresh.

I realize I echo similar thoughts every year on Ezra’s birthday, and I was thinking over this post as I was writing it, wondering if I should be trying to frame it all some other way, or deliver some poignant new point, a sound bite or a quotable moment. An “aha.”

But no, these are my feelings. This is the reflection that hits me every year on August 31st, Ezra’s birthday. Robyn and I don’t have a tradition. We’ve tried lots of things – champagne at his grave, happy days, reflective days, sad days. Nothing feels right. And that’s probably fine – it’s not right. We’ve never shied away from recognizing and embracing the pain we carry, understanding it’s a part of us, not the whole. But it is a deep and integral part of us. Sometimes, a thing just hurts. And “that’s the thing about pain – it demands to be felt”.

So happy birthday, Ezra. Your mommy said it right – you’re our little life changer.

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.

footage

Ezra Matthews

We had a powerful start to the week. We had some new friends in town shooting film footage of our story. It was therapeutic for Robyn and I. Usually, when we talk about Ezra, it’s details: born 2008, diagnosed with neuroblastoma at 400 days old in 2009. 13 months of treatment. Surgery, chemo, etc. Died November 8th, 2010. These past couple days though, we explored how it felt. The “dangerously numb” feeling after he died. The lack of caring for self during treatment, while we poured into Ezra, Price, and Charley. The years of sleeping pills, too much whiskey and bitters, wondering if we were “ok,” and what that even meant for us. It was honest to the point of being nerve-wracking, and refreshing. I know how people WANT us to feel, and too often I mold my words to wrap a bow on our story. I do a disservice to anyone who is genuinely trying to understand how these past seven years have been for us if I fail to explore the pain and grief as much as the amazing things that have happened in spite of and through our losses. Our losses have reshaped who we are. We will never say “everything happens for a reason,” as I could never justify saying Ezra needed to die in order for the good we’ve done since then to come about. I do know you choose what you do when your world falls apart, and I am proud of Robyn and myself, and all those who’ve helped us, for what we’ve done since then. The footage we shot these past couple days may take a while to come to you, but I hope when it does, it means something. And for anyone who carries loss in their bones as we do, our love to you. Thanks for coming over, Reed Morano and Dani Girdwood.

originally posted on Facebook