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

IMG_2297.JPG

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.

image

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

IMG_5147.JPG

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.

—————————————————————————————————

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.”

—————————————————————————————————

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.

———

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.

———

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!

———

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.

———

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.

—————————————————————————————————

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.

how can i help

1382351_10202264716047956_1561339004_n

Charlie moved in last Friday. We’ve taken to calling him Charles, and little Charley is Charley. I still call the wrong name half the time for both of them. I’m guessing that’ll never change.

It’s been both incredibly rewarding and tiring to welcome a new son to our family, as I suppose it always is. I told someone today, Charles is incredibly bright, funny, and driven – and daily reminds me how much we all need each other and how we’re always struggling for love and peace. He’s been in so many homes, families, and schools these past ten years I am sure it will take him a year or two to even believe we’re with him forever. His case workers already say he’s changed so much in these past months of visiting with us. My hope is as he feels the safety and love in our home, he can move from “living to survive” toward this journey we all seem to be on of learning ourselves and how we should interact with the world and people around us.

The other day I was frustrated. We’d been running like crazy people trying to get Charles in school, and all the details of welcoming a young man into our family, on top of what felt like a million things needing to be done, breaking, etc. One of those days – stretched out to weeks. We were kind of snappy toward each other; everyone was overwhelmed and tired. I was driving to the next place after another busy day of not being able to see my wife and kids, and frustrated.

I know it’s cliché, but I had this moment where I just looked at everything through the eyes of my family members instead of my own. Robyn was stressed wondering if we were doing the right thing asking Charles to enter a school with strict academic and life standards after so long of people expecting less of him (were we putting too much pressure on him? we know how much potential he has), wondering if she was showing him enough how much we care, wondering so many things a mother does about her children. These are deep thoughts – we are in charge of a life now, and what we do has deep effects on the man he will be one day soon. Charles was, I am sure, nervous. He is coming into a completely new home, way of life, and structure – was he behaving right? What was expected of him? Was this another home he’d be leaving soon (Charles – when you read this, no, it isn’t, you’re forever in our family to stay!)? Little Charley, of course, was just happy as could be. We could learn a thing or two from 3 year olds.

One thought came to me, and completely washed away my anxiety and stress.

How can I help?

When I got home that night, Charles was already asleep. I went into his room and said “you know we’ve got your back and are here for the long haul, right?” although he was asleep. I told him again the next day. I went into our room and gave Robyn a hug. I’d left the house in a hurry and a huff, and I’m sure she expected a continuation of that conversation. Instead, I said “I know this has been incredibly hard. I am scared sometimes too, and hope we are doing the right things. I hope our love for our sons will be strong enough to come through the decisions we make to build them into the men we want them to be. I love you.”

It was a powerful moment, and it’s something I’ve tried to do since then. Our entire life lately has been about helping people, both through Because of Ezra and through bringing Charles into our family. And I’ll tell you – the more time I spend figuring out how I can serve someone else, the less my own frustrations bother me. In other words – I find peace through serving others.

I usually like to wrap a better bow on these posts, but in this instance I just wanted to share that moment. It’s a continual thing.

it was just too much

I got an unexpected phone call yesterday.

A friend who I hadn’t heard from in a couple years called me. We talked about nothing for a few minutes, and I asked to what I owed the pleasure of the call. My friend said something like this:

“I wanted to apologize. When you were going through everything with Ezra, it was just too much for us to deal with. Emotionally it was too hard. We simply stopped calling or being around.

When Ezra died, I didn’t know how to reach back out to you. I felt so bad. So I just let us drift apart. I’m sorry. I don’t know if now is too little too late, but I just wanted to say how sorry I am.”

Wow. I was humbled and amazed to get this call. To my friend – thank you for having the personal conviction to say this to me. It means more than you know. I hold no frustration at all toward you, and am thrilled to have got your call.

This isn’t the first person to say this to us (although it is the second). When you lose a child to cancer, you become a member of this unofficial club of all parents who’ve felt the loss of a son; a daughter. Across the country and the world, through the internet, conferences, and our work with Because of Ezra we’ve met scores of families who’ve lost children. We’ve had many, many talks with people who have become great friends, discussing the strange things which occur when your child has cancer – and even stranger things when your child dies.

Over and again we hear the same story my friend told me yesterday – friends stop calling, people stop reaching out. There’s a depth of sadness inherent in the death of a child which shakes a person to the core. Beliefs are challenged, thoughts turn inward; people get reflective. For many people, like my friend, it’s just too heavy a burden to be constantly reminded of.

And yet, here Robyn and I are, living it.

We now carry an understanding of personal tragedy which is part of our cores. And it’s odd to me to think how heavy our hearts often feel, then think about our great friends Mike and Deb Gilbert in Uganda, who work to help a culture where a 50% mortality rate in children is simply the norm. We are blessed even in these losses.

People tend to do one of two things after losing a child – they become passionate about working to make sure this doesn’t happen for someone else, or they become passionate about getting very far from it. Teju Cole saidif you’re too loyal to your own suffering, you forget that others suffer, too.” That sentiment drives us to fight back against neuroblastoma, which we do through Because of Ezra, our non-profit.

And guess what? People don’t get on board from the sad stories. There are many studies showing (and our own experiences have echoed these findings) sad truths simply drive people away. You may get a donation from guilt, but then people are out. We don’t want to be reminded of suffering. I have to craft everything we say through Because of Ezra to be hopeful, always hopeful. Skip the tears, because everything is fine.

To be fair – there is hope, which is the thing; it’s the reason we even do it. The work we’re doing is helping, and we can see it in the families and children who are on the trials we’re helping to fund. But I’m saying I don’t want us to forget something:

Things aren’t always fine. 

When your heart and head are overwhelmed by the suffering of another, tell them. Say just that. “My heart is overwhelmed by all of this. I don’t have anything to offer, this is just so much.” We feel it too, in those moments. I mean, still, we feel it now. All the time. And our life today is great, though it’s built on a foundation of love and passion mixed with pain and hurt. The hard parts don’t go away just because they happened a while ago. Like I’ve mentioned – don’t be afraid to talk to us about our sons who are no longer here. We certainly haven’t stopped thinking of them as our family.

There’s this tendency people have not to acknowledge emotional pain, or to only do so indirectly by pointing out the good that came from the hurt. Maybe we were told somewhere along the lines that’s the correct way to do it. It’s not. On the flip side, it also doesn’t help if every conversation is wailing and depression personified. A simple acknowledgment of “wow, that must have been so hard” is enough to tell me you get it and are with me. If I want to chat from there I’ll lead it that way.

It doesn’t help if I say my kid had cancer and your first response is to list the good that came from it. As if these are reasons he had to die. When in truth (and this is slightly just semantics, but important ones), those good things happened because we decided to push through the pain and do something to help those who will be facing this tomorrow, or the next day. A flower blooming in a lot after a home burns down doesn’t negate or bless the fire; it just proves beauty can come from ashes.

Ignoring each other’s hurt has a devastating side effect – it makes us think we shouldn’t be feeling it. Suddenly the person hurting feels they’re the outcast – this most painful thing happening to them is awkward for others, and so they bottle it up. Brush the dirt under the coffee table; flip the couch cushion over to show you the good side when stuffing is falling out underneath. Rather, I’d ask you this – when your friends are hurting, don’t be afraid to approach something which is hard to hear or talk about. These are the moments you are truly caring for someone. It matters. It may hurt, but you may be surprised the compassion it begins to open in your life.

To my friend who called me yesterday – thank you. I realize I spoke a lot about the subject here, and I want to clarify it’s not just about you. Many people feel that same thing, and most never acknowledge it. I’m glad you did.

ezra’s fifth birthday would be august 31st

ezra-bicycle

In a few weeks, we were supposed to have a 5 year old.

Less than an hour before his September 1st due date, on August 31st, 2008, I held my first-born son for the first time. I remember laying Ezra on Robyn, thinking I was supposed to let her hold him first. She was so worn out from labor she looked at him, smiled, and instantly fell asleep. I looked at the nurse, who smiled and told me to hold him. That moment, sitting in a chair, covered in blue paper scrubs, my eyes red from lack of sleep, I just stared at Ezra. It felt like forever – Robyn had birthed this child. Our child. We had created life. It was one of the most profound moments of my life.

226262_1028902886165_5075_n

I wrote here on what would have been his 3rd birthday, as well as his 4th. I even wrote here on his 2nd birthday, inviting you all to his party. A lot of you came. It was an incredible night, with so many of our friends and supporters showing their love to Ezra and us. Ezra died less than 3 months later, and we have so many beautiful photos from that 2nd birthday party.

August, like November, and like March, are difficult for us. Ezra was born the day before childhood cancer awareness month (September), and every year we wonder all August what we should be doing to remember him on his birthday. And what we should do to honor him for the month of September, and all the other kids fighting cancer still. The last two Augusts we visited Ezra’s grave, and spent quiet time with friends. It was good.

This year for Ezra’s birthday we are once again inviting you all out to a big party – this time instead of celebrating Ezra’s health like we did when he turned two, we are celebrating the children who are fighting neuroblastoma still, or will be. We’ve put together a fun karaoke party (with a live band backing up the singers) in Ybor City, on Ezra’s birthday, with all money raised supporting research into a cure for neuroblastoma. You should come.

We are busy working on adoption as well, with an official “match” coming up next week. I’ll write a whole separate post on this when details are more ironed out. We are excited about our future, as our family once again is growing. If you’ve ever considered adoption – look into doing so from foster care. There are hundreds of children just in Tampa who have no families, and while we know it is going to be work, we couldn’t be more excited to welcome a new child into our family.

I don’t know if an event on Ezra’s birthday is perfect or foolish. I know we love making a difference in Ezra’s name for kids and families still in this battle. I know Ezra loved smiling and dancing and laughing more than anything. So in some ways, I can’t think of a better way to remember him. I also know every smile comes with a pang of grief, realizing all the reasons behind Because of Ezra. I have to believe we can make a difference, and we won’t ever give up. If you spent the time Robyn and I do meeting, praying for, crying with, and laughing with families who have children diagnosed with neuroblastoma now, you’d realize our story is everywhere. Being repeated, re-lived, re-felt. Just with different names.

I miss my son. Every day. It’s been nearly 3 years, and it doesn’t get any less painful. We try to turn the pain into passion, knowing if we aren’t helping people, we aren’t living the lives we want to live. The lives we want to model to our children.

You all mean a lot to us.