I have watched this over and over again. It is everything I feel.
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!
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.
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.
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 said “if 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.
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.
A couple years ago I wrote a post here called our family of five, sharing a bit about how death makes simple questions like “how many kids do you have?” difficult – or at the very least, strange. Our life is anything but normal.
We’ve got an exciting announcement – we’re adopting from foster care! Our great friend Jesse directs the Heart Gallery here in the Tampa Bay area, and for years we’ve known if we ever adopted it’d be through foster care, largely because of Jesse and her organization’s work. There are hundreds of children in Tampa at any given time who have no families, no homes to go to, and little hope. We know we can provide a home, hope, and be loving parents to some amazing child[ren!?] who’s experienced some loss in life.
There’s a 10 week class to be certified to adopt, which we’ve completed (with a couple make-up classes to finish in a few weeks). (By the way, this post was about one of those classes). From there, we meet with some people who’ve been working with us in the whole process and will help “match” us with a kid (or sibling group!) who they think goes well with our family. There’s some discussion, and we move forward either with the adoption process or the continuing search. We could have a new addition to our family for the holidays, or it could be a year.
Adoption will be bringing a burst of newness into our life, and we expect it will be much like many of the things we’ve been through in the past few years. A cocktail of 1 part difficulty, 1 part joy, and 2 parts work. We are so excited to begin this next chapter in our life! Out of the overflow of our hearts, we choose to help – to give.
It’s been interesting in these 10 weeks of classes to hear details on the foster care system, and how the people involved in their care talk about these children. They stress over and again – first and foremost these kids have felt loss. They’ve been ripped from their families, often in tragic situations. They’ve seen the lives they thought they’d have torn to shreds. They’ve wondered if they’ll ever feel their family is complete again. We’ve felt those things, too.
I encourage anyone who’s interested in knowing more about these children’s lives (and what’s coming in ours) to read a book called Three Little Words, by Ashley Rhodes-Courter. Ashley lived in foster care here in the Tampa bay area. She describes foster care, how she felt about her birth and adopted families, and how things had to change in foster care. It’s a brilliant read, and was a New York Times best seller.
Losing two children before your thirtieth birthday changes the way you think about everything. I live in this pinball machine where I bounce around from sadness to joy to a desire for adventure to a need to feel to a deep need to help people. We can’t change what people have been through, but we can change whether they’re on their own in it.
We can change the way someone will experience it tomorrow.
A lot is going on in our lives. This is an intense year, and while we are busier than ever, we welcome the growth and opportunities. Robyn is an incredible woman, and I fall more in love with her every time I am with her. I am so proud of her. Charley is learning to walk, eat, and talk, slowly but deliberately and with huge effort. I am so proud of him.
We’re always surrounded by hurt, laughter, tears, and hope.
in our home there is a room which is for “storage”
it used to have a crib
on the door there are still hand-Crayoned signs
“Ezra God loves you”
missing the comma
which always made us laugh
penned from children in a school class who I hope will remember
the day my son came to visit
with a smile so big
he didn’t need hair on his head
on my arm is written the time with breath
given to my first-born son
on my wrist are seven characters telling a tiny story
of a tiny person
our third son
who fit in the hand just past that wrist for one week
my sons are not gone
they’re just dead
and we’re not supposed to say “dead”
because it hurts to think of a son
a child gone
its uncomfortable to feel you don’t know what to say
or don’t have the answer to the questions
everyone has to ask when this happens
do prayers travel through time and space and I don’t even know what else
to achieve anything?
if I spin a quarter a hundred times and pray every time its heads
and it’s heads half the time
were my prayers heard and granted fifty times?
were my prayers heard and denied fifty times?
is a prayer more a nod to deity than anything else?
maybe death is too private
(but you’re wondering too
all the things I’m wondering)
and maybe I just need to heal
and maybe I just need to move on
as if watching your children die
is a stop on a bus tour
and not something that changes the colors around you
makes you shake uncontrollably for hours
makes you roar at the heavens until you forget everything except your own scream
until you’re not even sure it’s you making that sound
makes quiet feel different
as if you haven’t spent so much time
thinking this isn’t the place
or the moment
to talk about it
and you can talk about your mom who’s died
or your grandfather
(God rest his soul)
and all the times you had
how they changed who you are
and we’re all ok with it
but it’s awkward to mention my sons
because it’s tragic
because it’s not right
because it’s uncomfortable
but you see
it’s not uncomfortable for me to remember my sons
even though it hurts sometimes
my family is not defined by the people living in my home
and if our conversation nimbly dances around the moments in my life
you feel are painful
(and they are)
we’ve ignored these parts of me which burn brightest
which make Robyn still Ezra’s mom
still Price’s mom
which make Charley still their brother
which make me still their dad
my sons are not gone
they’re just dead
“but are you ok?”
what does it mean?
I’ll tell you what we are
we’re realizing all of us carry this huge strength
which wraps a home in hope
and holds up the arms of a friend who can’t
or the pole which holds a bag of chemo
to fight the cancer in a body
because we are created
with this innate need to express
to feel something
to connect to one another
and it makes every moment so necessary and meaningful
and we wonder if we’re missing it
whatever “it” is
we’re realizing you’re thinking some of this too
and maybe you’re “fine”
and maybe you’re not
and either way it matters
it can’t have been worth it
this attention to the need
to have this empty room in our home
when I see the fire in my wife’s eyes
because I said we have one son
and not three
or when a 6 year old fighting a killer in her body
puts a flower on the head of every person she sees
because she finds beauty where others see pain
when my chest tightens
and I catch my breath
every time I see a father
throwing a ball with his son
my sons are not gone
they’re just dead
Last night we sat in on a group of people talking about working with troubled youths. The instructor started cursing quite a bit during her story-telling, and there were some noticeable “whoa”s and nervous laughs in the group of 50 adults as she became more and more vulgar throughout her story.
Then she breaks character (or regains it?) and says,
If I’m offending you, or you’re feeling uncomfortable, you won’t be able to help these kids. They have been abandoned, abused, neglected, hurt. They are untrusting of you and desperately needing of you. They want love, and they want to prove to themselves and you that you are just like everyone else and couldn’t care less about them. They will say all that and much worse. The strongest thing you can say after these outbursts is a simple sentence:
“I’m still here.”
It rang so true to me. In the years since Ezra was diagnosed with neuroblastoma, I have become much more in tune to these hurts we all carry. The searching in our hearts, the wondering who we are, why we’re here, what is promised, what is right, and what is good. I have listened and watched as our friends and loved ones (and Robyn and I) live our lives, continue to define our passions and priorities, break and build.
I have friends who are at the tops of their games – great success, well known, respected. I have friends who are in low places – lives broken, promises shattered. I know many people in the middle of these extremes. We are searching for meaning, we are finding it, and we are searching more. Sometimes it’s far from the forefront of our minds, while we are excited and caught up in the passion of life.
We want to be known, both by others and by ourselves. Maybe we express ourselves through a song, a wall of paint, a film, a quiet garden. Maybe it’s through an attention to work. At the heart of it we look for community – we want to be known. The size of this community we crave can change, but it doesn’t disappear.
Hold fast to the people who truly matter to you, and don’t let yourself fall away from them just because you don’t understand the things they do after loss. It’s a world of broken people we live in, and it’s powerful to speak understanding and consistency to your loved ones.
“I’m still here.”
Pain is easy to portray, but to use your passion and pain to portray the ecstasy and joy and magnificence of our world is one of the greatest things in the world.
– Dr Who, paraphrased
we love you Ezra, and continue to see an ecstatic, joyful, magnificent world covered in pain