Video

There are 12 posts filed in Video (this is page 1 of 2).

my son, Ezra

My son, Ezra.
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I know life isn’t fair. I’m a grown up now, and I get it. Things happen, and sometimes they are with reason, and sometimes they are without. My son, Ezra, died seven years ago after fighting neuroblastoma cancer for 13 months. When I watch this video, I am broken over and again by the smallness of the moment, the casual magnificence. Oh, for another moment like that with him…

I carry that soul-screaming loss every day. I am a hopeful man, and for years after Ezra died I struggled to hold that hope. It wandered from me, tether-snapped back, and hid in the cracks in my bones left by the pain of loss. But I am a hopeful man.

Grief isn’t a season. Grief is a separate and simultaneous piece of your heart. It will not – should not – go away, and we simply continue. It is easy, and in some sad way comforting, to let grief overcome hope. I’m not sure if I’m saying that right… maybe to… rest in grief? Every moment I have a decision to carry or to be consumed by it. Not in an “unhealthy” way of not “moving through” something… I guess I’m saying simply this: you can not forget the child you’ve lost, and must still choose how to approach the world.

But I am a hopeful man. And I am surrounded by many hopeful people – who’ve known this icy clenched hand around their heart, who’ve stayed up crying for their sons and daughters, who’ve lost, who’ve fought, who’ve beaten cancer.

We may occasionally complain, but if we do it is because we choose to change this truth of childhood cancer. We may take days off because the closeness and weight of it all is too overwhelming that day. But usually – mostly – we are beating neuroblastoma.

Life is not fair. And terrible things sometimes happen for no reason. But WE choose to take tragedy as tempering. WE choose to stand when the shaking is furious, and to build practical and effective hope. We do this through research and clinical trials, understanding intimately the very thing which ripped our children from us, a terrible respect for cancer’s maliciousness.

600 kids. 30 hospitals. 19 clinical trials. 10 years. And so very many families who know a different truth than the one of loss my family (and many others) have, because of our work. I speak with depth of emotion because you cannot tell these stories without it.

Thank you for being a part of curing cancer for kids. #WEWillBeatNb

tomorrow is Karaoke for the Kure (video inside!)

Every time I see a kid like Sofia, beating neuroblastoma because of work we’re doing, my heart breaks in so many ways – good too. 6 years after Ezra died, I’m now friends with many people whose kids had or are beating neuroblastoma. And lots have lost kids, like Robyn and I. But the stories of kids beating neuroblastoma ARE becoming more normal. In just 6 years, we are seeing a difference.

I’ve said before – it’s too slow. The stakes are too high. I know too many kids who aren’t here anymore, and the huge smiles we have with each success are coupled with sad eyes knowing so many kids who weren’t saved. Still, we push forward because that’s not good enough. And it IS changing.

Robyn and I are just two people of the passionate and EFFECTIVE group we’re surrounded by in beating this cancer. I could mention 50 people right now who are either DOING the actual research, whose kids are on our trials, who are helping to fund research, raising awareness, or all of the above. We are strengthened and encouraged by the group we are a part of.

Please come to Karaoke for the Kure – Tampa tomorrow. I know it’s yet another event, and it costs money, and there’s other stuff going on, and blah blah blah. But I say this with full confidence: kids are alive today because of Beat Nb and the NMTRC’s work. So come celebrate what we’re doing, and be a part of the change we’re affecting. There’s work left to do.

https://beatnb.org/k/tampa/ for tickets.

I’ve still got a few tickets left which are sponsored (read: free for you), and some discount codes if the price is an issue. But it’s a charity event – full price is just as appreciated. 😉 Regardless, I’d love to see you.

pieces of Ezra

ezra-wall

Although it is hard to see, the picture above is of a piece of our wall which Ezra drew all over with a pen. As a Christmas gift to me, Robyn had a friend of ours (thanks, Michael) remove it from the wall, build this frame and mount the piece in it, and replace the drywall where it was pulled from, freshly painted to match the rest of the wall. I had no idea any of this happened. She gave it to me last night, Christmas Eve, and it is probably the most beautiful gift I’ve ever received. I’m so grateful for Robyn.

There are pieces of Ezra all over our life. This square of drywall, with the most “unimportant” squiggles of misbehavior, makes me catch my breath every time I see it.

In our shower, there is a small ledge at the bottom when you step in. Ezra and I would take showers together, and he would line up all his plastic toys on that ledge – always facing away from him. Each time I’d turn them toward him, he’d turn them away again. Now, every time I take a shower, I think of Ezra lining up his toys on that ledge, facing away from him.

I check the mail and remember Ezra as he would walk around in front of our house, just like in the video below. Such a quiet, “unimportant” moment which I always come back to. A sunny afternoon with my son. Nothing to do but hang out. A piece of Ezra.

A few months ago, a man named David called me after finding Ezra’s story online. His beautiful wife, Lauren, had been diagnosed with neuroblastoma at 29 years old – very rare. Last night, as I was driving home, I saw David had posted she’d died.

On Christmas Eve.

I cried in my car. David – Robyn and I send our love to you. We are crushed to hear this. I am so sorry.

In Lauren and David’s story, there is a piece of Ezra.

Today, as you are surrounded by people you love, and maybe as you grieve ones who aren’t there, find some joy in these “unimportant” moments. They are the stuff our joy is made of. These simple moments are the building blocks we use to create a feeling of being loved, and of loving.

We did many big things with Ezra, and there were many important moments in our life with him. But when I think of our first-born son, I remember him in the back yard covered in leaves. I remember him bobbing his head around in Outback as a song he liked came on. I remember how he would dance, and laugh, and dance, every day he was able. I remember these small moments with such clarity, pain, and joy.

To live your life with someone you love is so significant.

Ezra

Our prayer for you this Christmas season is for many of these “unimportant” moments. For living life with people you love. For smiles, even if they’re with sad eyes, as ours often are. The world is so tragically beautiful – and I am broken in it, and I am awed by it.

From Robyn, myself, and Charley – a Merry Christmas to you and yours.

 

Brooke Hester, and Christmas

I hope the holidays are going well for everyone. I wanted to share the latest 800days video which we published today. Robyn and I visited Grand Rapids a bit ago with AJ and met Brooke Hester and her mom Jessica. Brooke is a spunky little girl, and Jessica is such a passionate mother. We had an amazing day with them, and are grateful they shared their story with us. Please watch and share the video, and consider a Christmas donation to Because of Ezra to help us cure the beast that stole our son from us.

We decorated our Christmas tree this year all in gold, the color of pediatric cancer awareness. We even topped it off with 50 gold Because of Ezra bracelets. It felt weird to pull our Christmas stuff out for the first time in a couple years. Ezra was born August 31st, 2008. That year, 2008, we had a small Christmas in our apartment in Tampa with our firstborn son, Ezra. He was 4 months old. We were a young family starting our lives, and everything was perfect. It felt magical. We sent out Christmas cards for the first time.

October 4th, 2009, we took Ezra to the emergency room. 2 days later he was diagnosed with stage 4 neuroblastoma. October 10th we found out Robyn was pregnant. By the 20th we knew it was twins. We spent Christmas 2009 in our newly purchased home, and 3 days later went back to the hospital for round 4 of chemo. That Christmas was great – a lot of love. The Children’s Cancer Center in Tampa overflowed Ezra’s room with donated Christmas gifts. It was a year of hope, and a year of the unknown.

March 15th, the twins were born. We named them Price and Charley. March 22nd, Price died. I held Robyn in my arms, as she held Price. October 1st, after 192 days in the NICU, Charley finally came home. On October 12th, we left Charley at home with his nana, and headed to Orlando with Ezra. I posted a blog about faith and doubt, sharing some of the struggle we were feeling. November 8, 2010, Ezra died. I was so empty by then, everything felt the same. I could feel nothing, because I was feeling way too much. A generous person flew us to Greece, where Robyn and I stayed for 10 days with no outside contact, and I think that trip may have saved our sanity, and our marriage. We mourned.

We came back just before Christmas 2010, and spent it at home with people we loved. We didn’t decorate. I think there was a tree, it must have been set up by Robyn’s mom, but to this day I don’t think I know where it came from.

Last year, 2011, for Christmas, it hurt too much to do anything. We bought Charley some gifts, and headed to Seattle to spend the holidays with Robyn’s parents. We let them handle the festivities. The overwhelming feeling was of something missing. We had had 3 children, and one was with us that day. It’s not a feeling which one knows what to do with, really.

As 2012 closes, it is strange to look back at where we were a year ago, or two, or three, or 4, and fast forward to now. We have rebuilt our family to something which is strong as a whole, although often we find our individual selves weak. I lean on Robyn all the time, and she on me. I still ask God for direction, although I sometimes find it hard to trust Him. I am trying.

Charley knows we love him. I wonder how all this will process for him later.

There’s a tree in our front room, and I climbed up the oak trees in the front yard a couple weeks ago after my 31st birthday, and wrapped Christmas lights all around them. When the sun goes down, the lights warm the yard and the house with a Christmassy glow. Still, much of it feels like rote.

This year we’ll be surrounded by family and people we love for Christmas. I’ll probably wish you a Merry Christmas here that day. But I’ll tell you – it’s hard, every year. It doesn’t feel right. Our sons were stolen from us, and we love and live as a family continually putting itself back together. I know some of you are, too.

Love you guys. Ezra – we miss you. Merry Christmas.

800 days – Dave Matthews

Dave Matthews – 800DAYS from Because of Ezra on Vimeo.

Yesterday was the two year anniversary of Ezra’s death, and we launched our 800days project in honor of the days he lived on earth. I thought it’d be fitting to share with you where we got this whole 800days realization from, and the inspiration for the name.

The following is a transcription of the eulogy Dave Matthews delivered at Ezra’s celebration of life service November 13th, 2010 at Grace Family Church, Tampa, FL, seen above. This talk was the naming inspiration for our 800 days campaign – please take a look and share with anyone who’ll listen. Dad – we love you, and Ezra did too.

I guess I believe that a eulogy should be like a good sermon – it should have a brief introduction, a short conclusion, and they should be close together.

So give me about 5 minutes, because I only wanna say 3 things.

First, I wanna say a very special thanks to all the friends of Kyle and Robyn – many of whom have become close friends of mine – who have labored and struggled so hard for so long to help them in this battle. I think that the true test of friendship was proven over and over, by so many of you who stood by my family for 14 months straight. Never wavering, never straying from their side. Never complaining or tiring of any of the constant need for anything that this kind of battle demanded. Always supporting them emotionally… physically… through a campaign that could easily have destroyed friendships built on lesser love.

Lindsay. AJ and Mandy. Larry and Kim. Mike and Deb Gilbert. Derek, Kalisha. Joy Adcox Sutton – there’s a reason your face is on billboards. Abby, Kristin, the whole Bonham family. Paige… and I could go on and on and on. And those were just the hands that were close. Not to mention dozens – literally dozens – of total strangers that came to the door of my family’s house when I was there, and I would say, who are you? And they’d say… does Ezra Matthews live here?

And there were the hands that were here, but there were also the hearts that were far away. Josh. Jordan. Nate. Leah. Jason, Jacob, everybody – from around the world.

Hundreds of names that time simply won’t allow me to mention.

This is a celebration of life, and so I’m gonna ask you today to clap your hands for the kind of friendship and love that we’ve seen and endured today.

Two. I haven’t slept well for the past few months – and some of you are probably thinking, duh. What with Ezra’s cancer. But what has kept me awake at night has not been that so much as it has been awe. A-W-E, awe.

I lay awake at night in awe of the strength that Kyle and Robyn have demonstrated. At the mantle of maturity way beyond their years that they’ve been forced to assume, and took so gallantly and bore so greatly. You’ve been an example not only to me, but to thousands of people around the world. And your faith in your God has never wavered even in this deepest of possible pains. And I say to you now that no parent has ever been more proud of his children than I am of you two today, right now.

When I grow up, I want to be Kyle and Robyn Matthews.

Third. What about my grandson?

800 days.

His name, in one number.

That is the time with breath given to Ezra David Matthews.

Robert Fulghum said “I believe that imagination is stronger than knowledge. Myth is more potent than history. Dreams are more powerful than facts. Hope always triumphs over experience. Laughter is the cure for grief. And love is stronger than death.”

800 days.

In 60 years, I have seen many people come and go in my life, some permanently. I tell you now that there has never been a loss that has been felt so greatly.

In life there are lights, there are shadows, and there are darknesses. Ezra’s light – Ezra’s light was a beacon that called to every face he passed. Like Will Rogers, he’d never met a stranger. Even people who didn’t like kids would stop and talk to Ezra.

800 days.

Now, just the tiniest of memories loom large. In my bedroom there’s a guitar stand, and every time that Ezra would walk in there he would go over there and he would pluck those strings. Then he would dance a little jig and turn in circles until the echoes died away. He’d go pluck ‘em again; he’d do that over and over – sometimes for a half hour at a time, never stopping. Just laughing and dancing.

His dad taught him to ROAR when his mom would hold a little dinosaur up in front of him.

It was the kind of spirit that was displayed in those small things that he carried into his life that touched, touched literally hundreds of thousands of people.

And he did it in 800 days.

You know, I never had a chance to teach him to shoot a free throw. Never had a chance to teach him to throw a curve ball. Never taught him to read the grain on a 14 foot putt, but I can’t do that anyway, so…

But he taught me. He taught me to love again, he taught me to live again, he taught me to focus on the amazing little things in life. Like a stick whipping into a pile of leaves or an ant in the crack of a sidewalk. Or watermelon. Vanilla ice cream. He taught me to laugh again, get back in touch with the humanity that I had begun to miss in my life.

Shortly outside you’re gonna run into my family again. You’re gonna want to talk to us about somber things – but don’t. This is a celebration of life. He laughed his whole life.

So don’t be afraid to laugh with us even today when you’re shaking my hand or my wife’s. Or you’re hugging Robyn, or maybe you’re giving a chest bump to Kyle.

Don’t be afraid to pass along a laugh – because laughter is the cure for grief.

Today when I think of Ezra I smile. And now even with laughing memories I well up inside with tears, even when I smile. I find myself lying in bed at night with tears in my eyes. I find myself staring at a computer through a veil of tears.

I was a captain of Marines. I was once a leader of warriors. And I tell you now Ezra was a warrior, he was God’s warrior. He carried his message, and through the internet via his father, he carried it to literally over a hundred thousand people in 40 countries. And he did it with laughter.

He laughed through cancer. He laughed through pain. He laughed through life. He laughed through 800 days.

But Ezra will live on. As Emily Dickinson said, “unable are the loved to die, for love is immortality.”

But Ezra can’t speak now, so I will leave you with one more quotation. Speaking what Ezra can no longer speak, but saying what he demonstrated for 800 days.

Courage doesn’t always roar.

Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow.”

So from November 8th, for the rest of my life, I will simply say…

801…

802…

a year without Ezra

(I meant to write this on the 1 year anniversary of Ezra’s death – November 8 – but couldn’t quite do it. I’ve taken the small liberty of pretending I still did write it that day. 🙂 )

One year ago today we held our son in our arms as he died.

It was the second time we’d done so that year.

It feels like it just happened, but it also just as often feels like decades ago. We visited Ezra’s grave today, with a few close friends. I was surprised I didn’t feel more emotional while sitting there… the sun was warm, and whoever is buried next to Ezra (Trudy McAdoo – hey hey, McAdoos), was kind enough to make her headstone a bench, so I sat there soaking in the sun thinking about the day we buried Ezra. While I was thinking of that, three deer were grazing a bit away from us at the edge of the cemetery and the forest. There was a slight breeze, although it felt a bit too hot.

Mostly I just felt peaceful.

We don’t feel peace every day. Robyn spent most of her (sure, young) life wondering what she wanted to do. She often tells me when Ezra was born she felt so complete – she simply… knew him, and was the happiest I’d ever seen her – rolling around on the floor with him singing, playing, and being an incredible mother. The video at the top of this post was every day with Robyn and Ezra, usually even when he was sick (although he was sometimes less energetic those days). The day we lost him she was broken in a way I hadn’t anticipated (we were both, and still are, broken in many, many ways). She had lost that deep, self-validating, purpose-infusing connection she had with Ezra. Something nothing else in life had quite given her. The bond a mother who truly adores her son feels.

Robyn is an incredible mother.

I swear she and Ezra could talk to each other telepathically, ha. Ezra knew I was fun, but he knew mom would bring comfort. He could be covered in tears, and 3 seconds in her arms would calm him down. She fought for him like a lioness, and she loved him with depth and honesty. I could hear their laughter from any place in the house when she tickled him and they screamed with happiness. Robyn had notebooks full of research material, and bunches of tabs open in her web browser at any time reading up and asking questions about neuroblastoma and how we could fight more.

Robyn is an incredible mother.

Ezra would sleep on my chest a lot in the hospitals. Beds are in scarce supply, and couches and chairs are appreciated but not exactly comfort-filled. Robyn has dozens of pictures on her iPhone of Ezra and I fast asleep in some hospital chair or sofa. I always thought it was funny she took those, but they’re some of my favorite pictures of he and I now. I miss my son.

An anniversary of a death is a weird thing. There are no “traditional” things you do. We wondered if we should feel sad, or think through Ezra’s life more… really, it didn’t feel different than any other day without Ezra.

Not a day goes by – not one hour – that I don’t picture Ezra. To you perhaps he was a story; maybe you met him. Maybe you spent quite a bit of time with him. I hope his small life continues to make people change for the better. I don’t care how, really – I don’t care if you smile more; if you decide to fight against things like this that take our children; if you let your love be freer and more vocal; if you look for joy in every God-granted moment because you know so many miss it. Every story affects everyone different. But I hope Ezra’s affects you. Somehow. For good.

I’m happy often. I really am. Sometimes I lose all my energy and get overwhelmed by the weight of the loss. There’s no “fixing” grief; it becomes a part of who you are – you take it, you learn from it, you adapt to having it as an occasional companion. Loss doesn’t define me; grief isn’t who we are. I do not think it’s anything that ever completely leaves though – and I wouldn’t want it to. How much more we understand the looks we see in broken people’s eyes now. How real the truth we have to help.

Charley is coming along slowly but surely – he makes his own pace in life, and he’s a stubborn little man who is completely ok with this. I’ll write an update on him next week, and get you all some updated photos. He’s learning to crawl, and is stronger every day.

It’s November now, and the cold is coming in. Well, the Florida cold. We wrap up in an extra blanket at night, and put our jackets on when we leave the house. The crisp air is invigorating.

At Ezra’s service, someone asked people to write on cards “Because of Ezra,” and a brief sentence of how he’d affected them. Robyn and I read through the hundreds of cards today. Thank you, everyone.

Because of Ezra… we are better.

800 days

Hey folks. Here’s the celebration of life service video. It was a good 50 minutes long, so make sure you’ve got some time to sit and watch if you plan to. Again, thank you to everyone who came.

We have already applied for our 501c3 status for our foundation and will hopefully let you know on that by January. Awesome things are in the works…

Watch 800 Days on Vimeo.