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

Begin Again: Why I’m quitting the tech company I co-founded and going full time against childhood cancer.

My wife Robyn and I’s first born son Ezra died in 2010. He had been diagnosed with cancer on the 400th day of his life, and lived exactly 800 days. Ezra battled cancer half his life. He smiled through most of it. He was funny, curious, and compassionate. He flirted with strangers. He learned to walk and to talk in hospitals.

Ezra MatthewsWe learned a lot from Ezra, like you can dance and laugh through cancer. We learned the pain from some losses never goes away; it just moves from your skin to your bones. We learned childhood cancer is not yet beaten, and that incredible, strong, fragile families are also learning this every day.

Five years ago — a month after Ezra died — Robyn and I started Because of Ezra, a 501(c)(3) non-profit with a goal of finding and funding a cure for neuroblastoma and other childhood cancers. It has grown, giving over $700,000 to support patient-affecting childhood cancer research, including the first ever national clinical study approved for all incurable childhood cancers, and trials of a drug called DFMO which we hope is stopping relapse (over half of kids who beat neuroblastoma relapse — and there is no currently known cure for relapsed neuroblastoma). The results are promising.

Largely though, we have been working on Because of Ezra out of our margin. Robyn is a full-time mom, and our stubborn and joyful son Charley (born a premature twin; his brother Price died at one week old) has medical issues which take up much of her time. I had a couple tech companies I co-founded which took most of my time. (ModMy, LLC is a network of community sites with over 2m members who love modifying their phones, and Laicos is a Tampa-based Startup Studio and mobile / web creative agency.)

As I’ve spent these 6 years living in the childhood cancer world, meeting the families and children, the researchers and clinicians… I’ve fallen terribly in love. Childhood cancer is a crushing, inspiring world to live in. Daily, we are reminded of Ezra and our loss, and simultaneously built up as we meet more and more families battling and beating neuroblastoma. We are blanketed in loss, knit together by strength people should never have to know they own, and we stand at the front of a war, trumpeting a battle cry.

Ezra Matthews

I’ve loved technology since I was young, and have had a ton of fun (and some success) building companies in that space, but my heart was being pulled strongly toward continuing Ezra’s fight, and that of so many other kids we’ve met since he died. I spent 2015 wrestling with the thought of going full time with Because of Ezra. I had the conversation with Robyn many times, and a few people I respect in the childhood cancer world.

One of those conversations was with a gentleman who lost his daughter to neuroblastoma, and who has since with his wife (and team) raised over $100m toward beating childhood cancer. Over coffee, I asked him how it was moving full time to a non-profit. He told me it had been a big change, but they’d never looked back. That he and his wife knew they had to push this, and ran full into it. The conversation resonated with me. I had another conversation with a friend doing similar work, and his words were even stronger: “If I wasn’t clear — please allow me to state it now: Do this full time.”

And so, starting the first week of 2016, I am. I have resigned my position as CTO of Laicos, giving it to our talented Senior Architect Yeng Yang. I will remain a board member and advisor in Laicos, which my co-founder Ryan Negri will continue to run. Beating childhood cancer is my main goal now. And, surrounded by a powerful group of parents, kids, advocates, supporters, scientists, and clinical doctors, we will achieve this goal.

Because of Ezra has massive plans. We are working with the NMTRC and Dell on funding and advancing promising personalized medicine research. We are funding and pushing forward a drug called DFMO with very few side effects, which we hope is stopping relapse in kids with neuroblastoma. We pay attention to the entire neuroblastoma research landscape, and maintain relationships with other passionate groups who are doing our type of work.

We are beating childhood cancer.

Robyn told me, when proofing this post, Ezra was all the parts of me she loved. To know his name has some small attachment to the work we’re doing, affecting so many kids who are fighting childhood cancer now… it’s a bittersweet feeling. And really, though we started this because of Ezra, we continue it because of so very many children.

Because of _____

Our Because of _____ program recognizes we fight in many more names than Ezra’s.

I’d love your help. We’ve built an incredible network with Because of Ezra and the many people involved in furthering our mission. As I dive full time into this, we’ll need even more help to make our goals a reality. Please, reach out to me at kyle@becauseofezra.org to partner with us. We have big, audacious things we’d like to do — and the right support and partners will make them happen. Whether you’re a parent needing to connect to someone or know what treatments are available, or maybe wanting to partner with us through our Because of _____ program, or a corporate partner looking for an impactful charity to align with, or a volunteer wanting to help… there are many opportunities, and we need your help. Let’s continue to be an ever-growing fist in the face of childhood cancer.

Because of Ezra

↑ Ezra. For more of his story, read becauseofezra.org/why.


If you’d like to be a part of the work being done to cure childhood cancer, we welcome your involvement. If you are a parent seeking information on clinical trials we help to fund (or anyone with a comment), you can reach us at becauseofezra.org/contact. You can support Because of Ezra financially at becauseofezra.org/give. Because of Ezra, Inc is a 501(c)(3) tax-exempt organization with the Internal Revenue Service. Our EIN is 27–4013571. This article was originally published on my personal blog.

Ezra Matthews

five years

Five years ago, my son died of cancer. Our son. I write every year on November 8th… one year without Ezratwo years…. three yearsfour 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.

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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.

$215,000 raised in 2015 Karaokes for the Kure, beautiful evenings

We have absolutely been honored to have so much support this year in our Karaoke for the Kure events, both in LA (August 17th), and Tampa (Sept 26th). Over $125,000 was raised for childhood cancer research in LA, and over $93,000 in Tampa.

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In Tampa, 7 families who’ve personally fought or are fighting childhood cancer showed up, illuniating why we’ve started our Because of _____ program. We started Because of Ezra, well, because of Ezra, but we’re still pushing now because of so many kids and families.

Over 400 people showed up in Los Angeles, most of whom Robyn or I didn’t know, which makes us proud. We are sharing the stories people need to hear, and we are working to get people on board with this mission of curing childhood cancer. We are beyond grateful to United Talent Agency and Marissa & Matt, Erica and Brad, and all our friends in LA who made the LA event a success, again.

One of my favorite moments, and one of the hardest, was singing at Tampa’s event. Robyn asked me a couple weeks before the event if I would sing “Fix You” by Coldplay, and my initial reaction was “no way.” It’s a sad song, but beautiful, and I didn’t think it fit (nor that I could get through the song). But, as is usually the case, she was right – it fit perfectly into the evening, and we covered the screen behind me with kids we’ve met over these past 5 years as the song played.

Because of Ezra continues to grow, and I feel like I’m using the words “proud,” “honored,” and “humbled” constantly, but I experience those things daily. Robyn and I, Noelle Muniz now as well (our new Assistant Director for BoE), and all you supporting BoE, are little pieces of a giant group of people doing things just like us, and genius researchers and passionate physicians and clinicians all pouring their hearts into making it so, as Dr Giselle Sholler said this weekend, “we never have to tell a parent again, ‘your child is incurable.'” It makes a difference.

Love you all. I’ll make it a point to write here more often, and not just on big occasions, as I know we’ve been slacking a bit.

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.

Brooke Hester

Brooke+Mom

 

Brooke

Today, our friend Brooke Hester died.

I’m overwhelmed with love and anguish for her family. There’s a crushing feeling in my chest, which gets tighter as tears gather in my eyes, and there’s no release when they slip down my face. I’m so sorry, Jessica, Beau, Benjamin, and the little sibling on the way.

When we first met Brooke, in Grand Rapids, MI, we were filming her story. She was all business and smiles, saying a brusque hello and quickly making sure we had a gift from her prize cart. A squirting clown flower for me, and a “blossom” for Robyn (a flower for her hair, with a clip expertly hidden beneath).

While we were filming, Brooke was watching a video on her iPad with her headphones in, and at some point she looked up (just as her mom was whispering an emotional sentence), and shouted something random about the cartoon. It was that thing where your sense of volume is all messed up from having your headphones on, and we laugh to this day remembering and re-telling that story.

Over the next couple years, Brooke and an army of volunteers gave out over 19,000 blossoms, and many more smiles, through her organization Brooke’s Blossoms. Jessica and Beau stood strongly by as their daughter’s constant smile accompanied her determination to bring joy to kids in the hospital floors Brooke shared. All the while she was battling neuroblastoma, diagnosed in 2010, the year we lost Ezra to the same cancer.

The world’s not fair. Beautiful, inspiring people are torn from us. Kids get cancer, and sometimes die. Strong, good, determined families are left with loss. It takes us too long to find the cures we need, and we are pierced with pain, with an intimacy with tragedy which becomes a part of who we are.

Brooke lived. Her joy was loud, and she should still be here. We should be able to cure this. Jessica should still be laughing with her daughter, and Beau should still be that strong, safe embrace. She deserved to keep being that amazing big sister.

Hesters – we love you. We know it hurts, and we will always be here for you. I am so sorry. Robyn and I will mourn your daughter too, and we will not stop fighting to change the story for the next family. We love you.

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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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how’s Charley?

Choosing dinner

Choosing dinner

Let’s talk about Charley.

This kid is 4 months shy of 5 years old, and an absolute joy. If you say “cheese!” he drops everything and poses with the biggest grin you’ve ever seen. He tickles back. He gets back up after every fall, and he falls a lot. Unless there’s a bump on his head, on his way back up he’s smiling and determined. He’s got stronger abs than I do.

Charley has had, when compared to other kids his age, a tough coming up. He spent 7 months in the NICU at All Children’s in St Pete (we love you, ACH!), and was on oxygen for another 5 months when he finally did come home. We barely went anywhere with him – it required lugging an oxygen tank connected to his face with a tube and a nasal cannula, and we spent more time explaining than doing anything else when we were out. Not to mention having the entire attention of every single person we passed.

He didn’t eat for years by mouth, and still has a MIC-KEY button on his stomach and gets his feeds pumped in. He’s getting better now – having his tonsils removed helped this year – but the doctors think it will be another couple years before he’s fully eating by mouth and can have the button removed.

Charley’s legs hurt all the time. He’s got mild cerebral palsy, which causes tightening of the muscles. Luckily for him, he retains most of his muscle flexibility, but his legs are the worst. He’s learning to walk still, at 4, but it’s made tough by how tight those muscles are – he has to walk everywhere on tip toes. We’ve tried leg braces, but are now looking into Botox injections into the muscle to calm it down. Apparently it works well. If it doesn’t, in a year or two he may need surgery to help keep those feet flat. We’re hoping to avoid that – and you can see he’s walking much better and farther than ever.

Playing some golf with Brighthouse

Playing some golf with Brighthouse

Look at him walking!

Look at him walking!

Still, Charley smiles constantly. He is behind in many ways, but not when it comes to joy. He dances when music comes on. He’s singing along now, and loves to shout from the back seat which direction he wants us to turn at every red light. When a truck stops in front of us, Charley yells “Go around it!” He takes pictures of himself on every iDevice he gets his hands on, and then closes all the apps out by double-clicking the home button and swiping up on all the open apps.

He laughs a lot. Robyn knows his ticklish spots, and gets him every day. He will laugh for a good while then say “stop it!” He can tell you what color our cars are by memory, and knows the directions to Rocket Fizz – our favorite local candy store. He loves Mickey Mouse, Buzz Lightyear, and Magic School Bus.

We have learned a lot from Charley these nearly 5 years. He, like us, smiles through pain. He is strong and caring and curious, and determined despite constant frustrations his own body forces on him. He knows other kids are walking better, and you can tell the days it’s frustrating to him. Still, he gets up every time he falls, and asks for help or tries again.

He helps mama brush her teeth, and is starting to make jokes (although I don’t think he always know they’re funny, ha) and “say the darndest things.” Some of my favorite moments with him are Saturday mornings cuddling on the couch watching a movie while he’s getting his morning feed. Or watching him wrestle our boxer, Jack, who is the picture of patience and the perfect dog for a 4 year old. When Charles moves back in, I am sure the two of them will continue to have a great relationship like they have had.

Robyn works hard on Charley – he is a lot of work. Though he makes it a pleasure to do, he requires hip x-rays, neurosurgeon updates (for the shunt in his brain which will stay there for life), gastroenterologist visits (to check his MIC-KEY and how he’s eating), swallow studies, physical therapy weekly, speech therapy weekly, occupational therapy weekly, eye dr appts, and a host of other specialists and professionals helping us get him caught up. He may never be the fastest runner, but he will be the most determined. Our team of care professionals seem to think by the time Charley is 7 or so, you won’t be able to tell he was any different than other kids. Well, as far as development goes – obviously he’s much cooler. 😉 It used to be hard to believe that – he seemed so far behind. But lately, we’re constantly amazed at what he knows and how much he’s growing. He’s going to continue being incredible.

You deserved a glimpse of the boy Charley has become, and is becoming. Robyn texted me earlier saying “it’s time for another Charley update!” She was right. Charley is a smile and joy. We love every minute of growing with him.

Learning guitar

Learning guitar

Daddy is weird

Daddy is weird

New car?!

Our friend is on that poster!!! Go Hyundai

Peace!

Peace!

Pushing the stroller at Disney

Pushing the stroller at Disney

Fun at Disney

Fun at Disney

Mickey and Minnie!

Mickey and Minnie!

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.