ice cubes, in there

five years ago today, Ezra was born.

just over a month after he turned one, on his 400th day of life, we knew he had cancer.

the day before he turned two, we knew he’d relapsed.

half his life with cancer, half without.

after his 800 beautiful, transforming, fleeting days of life, we had his third birthday at a cemetery.

and his 4th.

tonight instead, we will smile and laugh and dance on his fifth birthday.

Ezra – because of you, we are better.



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.

charley, charlie

Back in July I mentioned we’re adopting from foster care. This entire time we’ve had a specific kid in mind who really stole our heart, and we’re proud to say we’re now officially moving forward with adopting him!


His name is Charlie. Kinda like how some of you spell our other son’s name – Charley.

He’s 14.

And he’s amazing!

Our good friend AJ Hurley is a master of all things film, and interviewed Charlie a while ago in a piece he put together for the Heart Gallery, a great organization in Tampa (well, nationwide) who photographs and videos children in foster care and lets the community know there are kids in our own neighborhoods needing families, love, and a home. Jesse Miller, who is pretty much a sister to us, runs the Heart Gallery here in Tampa and was the driving force behind making these videos happen. Another good friend of ours, Dan Weisberg, is the voice you hear. Ever since Robyn saw Charlie’s video, she knew we would be his parents.

You’ll have a chance to get to know Charlie more as we spend more time with him. We are excited and blessed to be able to take this step forward in our life and in his. We know it will be work – family always is! Already we know Charlie is much like us – a funny, smart, amazing person who has experienced  loss and tougher life events than many. We feel a kinship to him, and are looking forward to continuing that relationship.

We’ve started visits with Charlie, and the timeline until he moves in with us is not definite yet. We are really enjoying this time of getting to know him. Feel free to pray for us and him as our family continues to grow!


ezra’s fifth birthday would be august 31st


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.


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.