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.

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
800DAYS
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
1LB13OZ

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 daughter
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
like
why?
and
do prayers travel through time and space and I don’t even know what else
to achieve anything?
and
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?
and
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
wondering
defining
building
breaking
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
the hurting
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
I know

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.”