10

Yesterday would have been Ezra’s 10th birthday.

We’re supposed to have three boys. We’re supposed to have a ten year old, and two 8 year olds.

We have an 8 year old.

Charley would have loved having brothers. He’s such a social kid. Robyn said it’s one of the many things that breaks her heart often still – that Charley was robbed of what would have been his best friends growing up.

He’s growing up an only child.

I’ve been spending all my past couple weeks getting ready for our big gala, a week from today. Sat, Sept 8. There’s nearly a dozen families coming whose kids have had (or have) cancer. Half of those have lost their child. It weighs on me.

And we ARE making a difference. What we are doing to stop this from happening IS working. Our research chair, Dr Giselle Sholler, will also be at the event next week, sharing more of how it’s happening. Beating cancer today never changes the brokenness Robyn and I carry, but it adds joy.

Beauty peppered with tragedy is where we live.

Happy belated birthday, Ezra. We miss you.

I miss you.

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.

the day I became a dad

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.

five years

Five years ago, my son died of cancer. Our son. I write every year on November 8th… one year without Ezra… two years…. three years… four years… and today is five years.

I sat in a bar in Grand Rapids a few months ago with Pat Lacey, who is one of my great friends beating neuroblastoma with us. His son Will Lacey has, basically, chronic cancer. It’s not growing; it’s not going. We had spent all that Saturday afternoon (and wound up spending most of Sunday) in a hospital conference room with a handful of doctors and researchers discussing childhood cancer research, and drafting a new trial.

Pat and I talked about how nothing seemed as important as working toward a cure for neuroblastoma. As the September air fogged the windows of that Michigan taphouse, we knew this was what we’d be doing until there was no longer a need. Nothing fills me with that “rightness of action” feeling like what we’re doing through Because of Ezra. Through the NMTRC, Beat NB, and the team we are a part of. A team of families we are surrounded by, fighting childhood cancer, like Sofia‘s. Or Rea‘s. And other passionate people fighting childhood cancer, not always because of Ezra, but because of someone.

Robyn’s said it about herself, and I echo her: this is how I continue to be Ezra’s dad. I am broken, a mountain moved onto my chest, an unshakable feeling scratching at my mind that something is missing, something went wrong.

Ezra was a laugher, a constant smile. His head be-bopped when music was playing. I wish I’d have been able to know him as a man. I know he’d have been a good one.

It’s been over 6 years since he was diagnosed, 5 years since he died. I look at pictures to spark my memories, and watch videos. I have certain moments that play on repeat over and over again in my head. Ezra riding around on his bike in silence. Ezra’s hands covered in dirt as he plays in the yard.

My Timehop app showed me photos from a year ago this week, and I thought “huh? that was only a couple months ago” – a year is so little. But a year is all we had of Ezra without cancer, and a year with. One year of him walking. One year of conversation. Charley is 5 now, and he keeps getting cooler. I wish he had a big brother showing him the ropes. I wish I knew a 5 year old Ezra. Or 7, as he’d have been now.

We didn’t go to Ezra’s grave today. Not a day goes by that I don’t think of Ezra, miss him, but we have been to his grave less than a dozen times since he died. They call headstones “markers.” I think, I hope, our life is a marker for Ezra’s life.

I asked Robyn what she wanted to do today, and she said she wanted a cat. I laughed it off, and we cleaned up the house a little. But the more I thought about it, the more I liked her idea (this happens often).

Today, we got a cat. She only has one eye. We named her Penny.

We brought Penny home, to a house Ezra never knew, and set her up. She’s been hiding under the couch for the last 90 minutes. But I know she’ll come out soon enough, and we’ll get to know her. That’s what we’re doing today.

Why would a loving God let my children die?

Recently, I received an email from someone teaching an apologetics course at her church.

Because you have dealt with so much tragedy in your life and are involved with other people who are going through tough times with their children, I need your help in answering this question from a Christian perspective.

What is your response to the question, “Why would a loving God let my child die?”

I understand if you can’t answer this. It is definitely a difficult question.

Some background — in 2010, Robyn and I lost two sons. Price died in March at 1 week old, from complications of being born premature (26 weeks). His twin Charley is 5 now and requires extra care over a typical 5 year old, and is magic. Eight months after Price died, our first-born Ezra died from neuroblastoma cancer. He’d been diagnosed only a couple days before we found out Robyn was pregnant with the twins.

The question of why God would let my two sons die has been central to my spiritual life these past 5 years. I spent my later teen years and early 20s leading worship at churches in Seattle, came to Tampa doing the same in 2005, and Robyn and I buried our first two sons here in 2010. I did not grow up in church, but have been falling in love with God since I was 15.

Did God let my children die? I find it necessary to think on this before I can even look at “why.” “Let” can mean both “allow” or “cause,” and those two meanings have worlds of distinction. Did God allow my children to die is a different question than did God cause my children to die. It’s not just semantics — “allow” means something else caused this to happen, and God for some reason chose not to heal or change it. “Cause” means God gaveEzra cancer, and caused Price to be born so early — to die at one week old.

I believe those are the only two options — allow or cause. I believe God is real, and He is omnipotent, omniscient, and omnipresent. He had the power to change both outcomes (and stories along the way). He had always known Robyn’s and my sons were going to die (and when). He was present the entire time. It wasn’t a case of God forgetting, or being busy elsewhere, or not knowing, or it being too big of a thing. God either DID this — killed my two sons — or He allowed it to happen by not intervening. I believe it was the second of the two.

This week, I was reading A. W. Tozer’s book The Knowledge of the Holy. I’d been letting the topic of this post kick around in my mind, and was surprised and excited when Tozer began to address a similar point in his book. If God is sovereign — all powerful, all knowing, and free — how do things like evil, pain, and death exist in the world? Did God create them? Why does He not abolish them? I encourage you to read Chapter 22 of Tozer’s book, “The Sovereignty of God,” as he writes well on this topic.

You will be perhaps as disappointed as I to find Tozer’s answer is, essentially, “I don’t know.” He says:

While a complete explanation of the origin of sin eludes us, there are a few things we do know. In His sovereign wisdom God has permitted evil to exist in carefully restricted areas of His creation, a kind of fugitive outlaw whose activities are temporary and limited in scope. In doing this God has acted according to His infinite wisdom and goodness. More than that no one knows at present; and more than that no one needs to know. The name of God is sufficient guarantee of the perfection of His works.

I land on the same conclusion. God knew of all the issues with our sons, and always knew. For reasons I cannot know, He chose not to heal them, although He could have. As Jacob wrestled with God (Genesis 32:22–32), so I have spent much time shunning, shouting at, and doubting God since October 4th 2009, the day Ezra was diagnosed with the stage 4 neuroblastoma cancer that 400 days later took his life. I have also spent time wrapped up in His mercy and love, recognizing if I could give explanation to every action or inaction of God, He wouldn’t be God. As a prideful, broken, intelligent man, this brings me as much unrest as it gives me peace.

I have not yet found my way back to a wholeness of trust in God. I do not know how long it will take, though I long for it. Jacob wrestled through a night with God, after much struggle in his life, and came out with blessing and a broken hip. My wrestling match continues. I am angry sometimes, weary others, and my pride keeps me from a fullness of closeness with God. I immaturely idolize my struggle, vainly refusing to say it is well with my soul when these sorrows, like sea billows, roll. I require an answer to sit rightly with me before I can forgive; as if God has wronged me. As if I had any power to forgive Him if He had. (Job 38–42 lays me low on this). And as if the answer Tozer put forth wasn’t enough; “The name of God is sufficient guarantee of the perfection of His works.”

Originally, I planned to write a much longer post on this question. Instead, I will keep it short, and let other thoughts come later.

I still believe God is everything I knew He was before. Holy. Just. Merciful. Good. Sovereign. Wise. If you’ve spent any time in church, you may be saying, as I have heard, “But this is an easy answer! When Adam and Eve sinned, sin entered the world, and that is the source of cancer, and sickness, and natural disasters, and all these things we wonder how could happen if God is truly good. Sin and Satan have temporary and partial reign on earth until God casts them away.” This is wonderful logic on how these things can happen, but it doesn’t answer the larger question; why do these things exist at all? Why must we wait on God eliminating them? Why is “no more death, neither sorrow, nor crying, neither shall there be any more pain” (Revelation 21:4) delayed? What justifies this reign of struggle and sin on earth today? Why did Robyn’s and my sons die, along with so many other sons and daughters?

I have no answer. I have felt God’s presence, and know He is real. I have faith He is God, and I rest in this knowledge. I hope in my life I can have a greater understanding of why death and pain continue. I hope I can feel more peace than unrest. When I think on the vastness of who God is, logically I find no other response than worship and adoration, and I am humbled in admitting my hurt, my loss, and a foolish pride often keep me from these responses. I am frustrated how difficult this is for me.

You, reading this, may struggle with similar thoughts, and perhaps hoped I would offer clarity. I wish I had better words to put ease in your mind.

Until then, I will keep searching the heart of God.

seven

Ezra would have been seven years old today. Happy birthday, son.

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It is terrible and beautiful that Ezra’s birthday falls on the day before childhood cancer awareness month, September. Every year since forming Because of Ezra, we gear up for September for months, and then just before it starts, our lives get the wind knocked out of them today.

Robyn and I were in Philadelphia this week discussing childhood cancer research with an amazing group of people who are leading the charge in childhood cancer advocacy. It was humbling and exciting. We sat in the hotel room one afternoon, and broke down in tears when a video of Ezra came up on Robyn’s Timehop app. It’s at the bottom of this post. We cried together for a while.

It isn’t fair. There’s no happy bow on losing a kid to cancer, and there’s no real explanation. It’s just a terrible thing that happens, and we live with that tear in our heart. That day in Philly we sat on the bed, talking about how he was so much like me, always hopeful and smiling, easy for Robyn. How he had my lips. We remembered how he used to dance around all the time, and we wondered it’d have been like to have him here, now, a 7 year old. What would be different.

We miss Ezra. Some days my memories of him are less clear than my memories of the moments we have on video or pictures, and that’s scary. It’s weird and sad to think when I listen to his voice, I’m a little surprised not to hear Charley’s, which I’m so used to now. That I have to watch a video to remember Ezra’s voice sometimes. I hate that. I feel like I should be able to cement it all clearly in my memory for full recall at any time, just by some force of willpower. I’m angry that it doesn’t always work.

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The other day, we met the family of a little girl named Sofia. Sofia is being treated at All Children’s. This weekend we shared a meal and a day with them at their home in St Pete, and watched Charley and Sofia run around their living room and pool, with Sofia’s older brother Aiden.

We talked about the way priorities shift when cancer slams into your family through your child. We talked about how trivial the things we used to worry about seem, and how open our eyes feel to this scary new world of need; how we never even realized childhood cancer was, as it seems once you’ve been touched by it, everywhere. We talked about how we are beating it. Robyn and I are proud we’re able to help bring trials and more treatment options here, so families don’t have to travel, often spending time with only one parent around.

We’ll be celebrating Ezra’s birthday by remembering his smile and laugh, and by knowing we are making a difference still, in his name. Happy birthday, Ezra. Your mom and I love you, and miss you.

robyn’s birthday wish

Today’s my birthday, and I’ve got one wish. Ezra lived exactly 800 days, and January 16th will be 800 days since he died.

I wish for us to sell 800 Because of Ezra bracelets by January 16th. I’d like to see Ezra’s name all over this country. Of course, any money raised will go to Because of Ezra – into research into a cure. Plus – we have a cool announcement on the 16th as well.

We’ll keep a current count at the link below! Thanks, everyone – you people make me smile every day.

http://800days.org/bday/ – PLEASE SHARE!

Brooke Hester, and Christmas

I hope the holidays are going well for everyone. I wanted to share the latest 800days video which we published today. Robyn and I visited Grand Rapids a bit ago with AJ and met Brooke Hester and her mom Jessica. Brooke is a spunky little girl, and Jessica is such a passionate mother. We had an amazing day with them, and are grateful they shared their story with us. Please watch and share the video, and consider a Christmas donation to Because of Ezra to help us cure the beast that stole our son from us.

We decorated our Christmas tree this year all in gold, the color of pediatric cancer awareness. We even topped it off with 50 gold Because of Ezra bracelets. It felt weird to pull our Christmas stuff out for the first time in a couple years. Ezra was born August 31st, 2008. That year, 2008, we had a small Christmas in our apartment in Tampa with our firstborn son, Ezra. He was 4 months old. We were a young family starting our lives, and everything was perfect. It felt magical. We sent out Christmas cards for the first time.

October 4th, 2009, we took Ezra to the emergency room. 2 days later he was diagnosed with stage 4 neuroblastoma. October 10th we found out Robyn was pregnant. By the 20th we knew it was twins. We spent Christmas 2009 in our newly purchased home, and 3 days later went back to the hospital for round 4 of chemo. That Christmas was great – a lot of love. The Children’s Cancer Center in Tampa overflowed Ezra’s room with donated Christmas gifts. It was a year of hope, and a year of the unknown.

March 15th, the twins were born. We named them Price and Charley. March 22nd, Price died. I held Robyn in my arms, as she held Price. October 1st, after 192 days in the NICU, Charley finally came home. On October 12th, we left Charley at home with his nana, and headed to Orlando with Ezra. I posted a blog about faith and doubt, sharing some of the struggle we were feeling. November 8, 2010, Ezra died. I was so empty by then, everything felt the same. I could feel nothing, because I was feeling way too much. A generous person flew us to Greece, where Robyn and I stayed for 10 days with no outside contact, and I think that trip may have saved our sanity, and our marriage. We mourned.

We came back just before Christmas 2010, and spent it at home with people we loved. We didn’t decorate. I think there was a tree, it must have been set up by Robyn’s mom, but to this day I don’t think I know where it came from.

Last year, 2011, for Christmas, it hurt too much to do anything. We bought Charley some gifts, and headed to Seattle to spend the holidays with Robyn’s parents. We let them handle the festivities. The overwhelming feeling was of something missing. We had had 3 children, and one was with us that day. It’s not a feeling which one knows what to do with, really.

As 2012 closes, it is strange to look back at where we were a year ago, or two, or three, or 4, and fast forward to now. We have rebuilt our family to something which is strong as a whole, although often we find our individual selves weak. I lean on Robyn all the time, and she on me. I still ask God for direction, although I sometimes find it hard to trust Him. I am trying.

Charley knows we love him. I wonder how all this will process for him later.

There’s a tree in our front room, and I climbed up the oak trees in the front yard a couple weeks ago after my 31st birthday, and wrapped Christmas lights all around them. When the sun goes down, the lights warm the yard and the house with a Christmassy glow. Still, much of it feels like rote.

This year we’ll be surrounded by family and people we love for Christmas. I’ll probably wish you a Merry Christmas here that day. But I’ll tell you – it’s hard, every year. It doesn’t feel right. Our sons were stolen from us, and we love and live as a family continually putting itself back together. I know some of you are, too.

Love you guys. Ezra – we miss you. Merry Christmas.

800 days – Dave Matthews

Dave Matthews – 800DAYS from Because of Ezra on Vimeo.

Yesterday was the two year anniversary of Ezra’s death, and we launched our 800days project in honor of the days he lived on earth. I thought it’d be fitting to share with you where we got this whole 800days realization from, and the inspiration for the name.

The following is a transcription of the eulogy Dave Matthews delivered at Ezra’s celebration of life service November 13th, 2010 at Grace Family Church, Tampa, FL, seen above. This talk was the naming inspiration for our 800 days campaign – please take a look and share with anyone who’ll listen. Dad – we love you, and Ezra did too.

I guess I believe that a eulogy should be like a good sermon – it should have a brief introduction, a short conclusion, and they should be close together.

So give me about 5 minutes, because I only wanna say 3 things.

First, I wanna say a very special thanks to all the friends of Kyle and Robyn – many of whom have become close friends of mine – who have labored and struggled so hard for so long to help them in this battle. I think that the true test of friendship was proven over and over, by so many of you who stood by my family for 14 months straight. Never wavering, never straying from their side. Never complaining or tiring of any of the constant need for anything that this kind of battle demanded. Always supporting them emotionally… physically… through a campaign that could easily have destroyed friendships built on lesser love.

Lindsay. AJ and Mandy. Larry and Kim. Mike and Deb Gilbert. Derek, Kalisha. Joy Adcox Sutton – there’s a reason your face is on billboards. Abby, Kristin, the whole Bonham family. Paige… and I could go on and on and on. And those were just the hands that were close. Not to mention dozens – literally dozens – of total strangers that came to the door of my family’s house when I was there, and I would say, who are you? And they’d say… does Ezra Matthews live here?

And there were the hands that were here, but there were also the hearts that were far away. Josh. Jordan. Nate. Leah. Jason, Jacob, everybody – from around the world.

Hundreds of names that time simply won’t allow me to mention.

This is a celebration of life, and so I’m gonna ask you today to clap your hands for the kind of friendship and love that we’ve seen and endured today.

Two. I haven’t slept well for the past few months – and some of you are probably thinking, duh. What with Ezra’s cancer. But what has kept me awake at night has not been that so much as it has been awe. A-W-E, awe.

I lay awake at night in awe of the strength that Kyle and Robyn have demonstrated. At the mantle of maturity way beyond their years that they’ve been forced to assume, and took so gallantly and bore so greatly. You’ve been an example not only to me, but to thousands of people around the world. And your faith in your God has never wavered even in this deepest of possible pains. And I say to you now that no parent has ever been more proud of his children than I am of you two today, right now.

When I grow up, I want to be Kyle and Robyn Matthews.

Third. What about my grandson?

800 days.

His name, in one number.

That is the time with breath given to Ezra David Matthews.

Robert Fulghum said “I believe that imagination is stronger than knowledge. Myth is more potent than history. Dreams are more powerful than facts. Hope always triumphs over experience. Laughter is the cure for grief. And love is stronger than death.”

800 days.

In 60 years, I have seen many people come and go in my life, some permanently. I tell you now that there has never been a loss that has been felt so greatly.

In life there are lights, there are shadows, and there are darknesses. Ezra’s light – Ezra’s light was a beacon that called to every face he passed. Like Will Rogers, he’d never met a stranger. Even people who didn’t like kids would stop and talk to Ezra.

800 days.

Now, just the tiniest of memories loom large. In my bedroom there’s a guitar stand, and every time that Ezra would walk in there he would go over there and he would pluck those strings. Then he would dance a little jig and turn in circles until the echoes died away. He’d go pluck ‘em again; he’d do that over and over – sometimes for a half hour at a time, never stopping. Just laughing and dancing.

His dad taught him to ROAR when his mom would hold a little dinosaur up in front of him.

It was the kind of spirit that was displayed in those small things that he carried into his life that touched, touched literally hundreds of thousands of people.

And he did it in 800 days.

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 curve ball. 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.

Shortly outside you’re gonna run into my family again. You’re gonna want to talk to us about somber things – but don’t. This is a celebration of life. He laughed his whole life.

So don’t be afraid to laugh with us even today when you’re shaking my hand or my wife’s. Or you’re hugging Robyn, or maybe you’re giving a chest bump to Kyle.

Don’t be afraid to pass along a laugh – because laughter is the cure for grief.

Today when I think of Ezra I smile. And now even with laughing memories I well up inside with tears, even when I smile. I find myself lying in bed at night with tears in my eyes. I find myself staring at a computer through a veil of tears.

I was a captain of Marines. I was once a leader of warriors. And I tell you now Ezra was a warrior, he was God’s warrior. He carried his message, and through the internet via his father, he carried it to literally over a hundred thousand people in 40 countries. And he did it with laughter.

He laughed through cancer. He laughed through pain. He laughed through life. He laughed through 800 days.

But Ezra will live on. As Emily Dickinson said, “unable are the loved to die, for love is immortality.”

But Ezra can’t speak now, so I will leave you with one more quotation. Speaking what Ezra can no longer speak, but saying what he demonstrated for 800 days.

Courage doesn’t always roar.

Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow.”

So from November 8th, for the rest of my life, I will simply say…

801…

802…