Kyle Matthews

3 (Charley edition)

— begin Charley summary 🙂 —

Today Charley turns three! We’ve had a great day; Charley slept in a bit after waking up early from allergies messing with his nose. We visited one of the local “paint your own pottery” places here in Tampa, and Charley splashed paint over all of us while putting multi-colored handprints on a piece of pottery.

Pottery painting in Tampa.

A visit to Cracker Barrel for lunch, where he picked up some toys (and a lot of dumplin sauce on his face), and now Charley’s taking his Birthday Nap.

Three is fun with Charley, although different. He still gets therapy at home 5 times a week (physical, speech, and occupational). He still doesn’t walk on his own (nor even stand) but he pulls to a stand and cruises on anything he can find. He has a metallic green walker which he careens all over the house (and the neighborhood!) in, terrorizing the dogs and our feet. He’s very ready to walk, but because of the tightness in his muscles it is difficult for him. Even so, we feel like it’ll happen soon. He wears leg braces 14-18 hours a day to help with his muscle tone.

Eating is still something Charley doesn’t really do – a 3 year old who doesn’t know much about ice cream. He’s still fed through his G-tube (in his belly), with a pump, which gets some stares if we take him out, but is normal for us by now. He likes to get tastes of food, which we encourage – although we’re talking very small amounts. As in, today he had 1/4 of a french fry which made him throw up a bit. Food is a long road with Charley, but Robyn works on it every day, along with his at-home nurse, and his speech therapist.

Speech – which doesn’t actually have anything to do with talking, but instead anything mouth related. A lot of Charley’s eating problem is a severe gag reflex he has (the medical term is dysphagia). The speech therapist helps Charley exercise and use his mouth, play with and smell foods, and continual stretches for all his mouth muscles. Oddly enough, not eating also gives him those cute chubby cheeks – most kids lose those when they start using their mouth to eat, exercising jaw muscles.

Charley talks, but only a few words – mama, dada, baby, jack, yah, and bye bye. He waves hello, and is learning new sounds a lot more lately – experimenting with his mouth, that sort of thing. Developmentally, we’re told he’s around 18 months. Doctors do say he will need much more work than a normal kid (hey, that is normal for us!), but they maintain he should be caught up with only very minor issues (probably no marathons for this kid) as he gets older.

Charley’s starting SCHOOL on Tuesday! It’s a big change mentally for us – he’s a bit behind developmentally, which can make it difficult for him to hang with kids his age. The school near our house has an awesome program for kids who need a little more help, and we had a meeting with TEN people there who are really investing in helping him out. He’ll be with a nice small class, around a dozen kids. Some completely “on-track,” some who need some extra work… all great kids. He’ll be there 5 days a week, full days! This helps to prepare him for kindergarten – and they really seem like a great team.

— end Charley summary 🙂 —

Today is a strange day. It’s also Price’s birthday – Charley’s twin brother. Although they both had an incredible amount of issues to work through when born (Charley spent over a year hooked up to an oxygen machine, the first 7 months of which were in a hospital without really ever leaving his incubator/tiny hospital bed), Price died only a week after today, in 2010. Of course we can’t help thinking about Ezra’s third birthday, a couple years ago. That was only 9 months after we lost him. Other young parents ask about Charley as we’re out “How cute! How old is he?” and when we respond with his age, the answer is almost always “oh…” with a questioning look. It’s a good birthday, but it brings a load of reflection and memory with it.

So many of our friends all over the country are having really tough moments lately. It hurts to see people we love in pain, and it hurts to constantly be learning how much a part of life pain is. It makes small moments more beautiful.

Overall we’ve been good. Charley is becoming more and more a little boy, Because of Ezra is going well, and Robyn and I are feeling strong and in love. It’s spring in Tampa, which means weather in the 70s, sunshine, and light breezes. Perfect walking around weather. Or strolling, in Charley’s case. There’s a feeling of “waiting;” a pause, like some change is coming… but I think we’re great. We’re going to be great.

pain

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

Giving Away $100,000 in 2012

Today marks the day we’ve been without Ezra as long as we were with him. 800 days from the day he died, after living exactly 800 days. It’s a strange day for us.

We thought it would be fitting to do Because of Ezra’s giving for 2012 on this day – this is only something we could have done Because of Ezra. So this morning, Robyn and I presented a gift from Because of Ezra in the amount of $75,000 to the neuroblastoma work being done by Dr Giselle Sholler at the Van Andel Institute in Grand Rapids, Michigan. Our gift was matched by an incredibly generous local family trust, meaning the total gift will be $150,000. This is specifically to fund a trial using DFMO, an investigational new drug which prevents relapse of neuroblastoma. We personally know many of the children on this trial, and it’s a drug which has no significant side effects, and so far has been extremely effective. 50% of children who fight neuroblastoma to the point of no evidence of disease relapse – and there is no current cure for relapsed nb. Preventing relapse would be a huge accomplishment. Dr. Giselle Sholler received the gift along with the CEO of the Van Andel Institute, David Van Andel.

We are honored to be able to contribute to work which is making a huge difference in children’s lives who are fighting the disease Ezra died of. In all their names, and from the bottom of Robyn and I’s hearts – thank YOU for supporting what we’re doing Because of Ezra. We couldn’t have done this today without all your support raising awareness and funds. Our board members Marissa Devins, Erica Copeland, and Derek Pupello (and their spouses) all deserve a huge thank you as well – they are incredible people who make doing all this easier, and we are so grateful to have them on board. They are also amazing friends.

Late in December, we also supported the work being done by Dr Robert Seeger and the team at NANT in Los Angeles, with a $25,000 gift. NANT is doing some great work, including a study on the biology of neuroblastoma, and we’re honored to support them as well.

Through your help Because of Ezra was able to give $100,000 in 2012 to researchers, physicians, and scientists making a difference in survival today for children fighting neuroblastoma. Thank you, thank you, thank you.

Robyn mentioned raising awareness and giving toward a cure is a way for her to continue being Ezra’s mother – to keep honoring his name, to keep fighting the fight he started for us. We know the hurt neuroblastoma brings to a family, and to be able to take that away from someone in Ezra’s name has so much meaning for us.

We look forward to doing even more to cure this horrible disease in 2013 – and telling more people about the need, the fight, and the ways to cure this. It is possible, and with people like you helping us, we know we can do this.

Thank you.

2013, a kiss from Ezra

Tampa Convention Center, New Years Eve, entering 2013.

For New Years Eve, Robyn and I went out with some close friends of ours to the Tampa Convention Center, where there would be a “ball drop”, fireworks, and some music. 2012 had been a hard year – walking the line between grief that burns so icily deep it pauses your very will to move forward, and the thaw of knowing our life does in fact continue, fighting to give meaning to our loss of Ezra and Price (and perhaps a level of innocence in ourselves), and rebuilding the picture we’d had of our future family.

New Years is a unique holiday – these celebration or remembrance days tend to trigger our retrospective selves, but none comes close to the heightened scrutiny we feel on December 31st each year. It is a day when the past is tangible. I usually think not only of the past 12 months, but of the years I’ve had before – every end of year slideshow plays in my mind, every stop-and-consider-myself moment. It is one of those evenings when the future and the past are equally present.

The night was spent in good company with good talk; fast forward to the countdown.

Fireworks would be shot off above the bay, so shortly before midnight thousands of us pushed to the terrace. There was a ball drop with cash inside the door, which kept many people inside, hoping for a fluttering $5 bill to land in their stretched fingers. We stood just outside the door.

Just after the cash “ball” dropped, hundreds of people bottle necked out the door to watch the fireworks (they went on for 5 or 6 minutes after midnight). People were pushing and shoving – negating all their resolutions to be more aware of the human race around them – and generally having a good time. A girl in her young 20s somehow got pushed into our small circle of 4, and we brought her into our group to shield her from the throng around us.

It was loud, it was sweaty, and it was pushy. This girl had been nearly falling, and we brought her in and held her up. She smiled and yelled a “Happy New Year!” to us. People were celebrating all around, and the fiery sky was making our faces glow red and green as explosions went off 500 feet overhead. The girl grabbed Robyn’s face and kissed her on the cheek, turned to me, and did the same. In our ears she said “you guys are great. You’re going to be great.”

It was an odd moment, practically, although in us there was no strange feeling. Conversationally (at high volume), Robyn asked the girl her name. She leaned in to us and said,

“Ezra.”

Ezra.

Robyn quickly slipped a bracelet on her wrist, and the girl looked down and said “wait – is this a joke?” None of us really could talk for a minute – so our friend (who’d been watching this all) leaned in and gave a quick recap of our story.

“They had a son named Ezra, who died of cancer in 2010. He was 2.”

She looked at us again, and said “I’ll find you.” Then she disappeared into the crowd, and we haven’t heard from her since.

Thank you for the kiss to start 2013, Ezra. We love you, we miss you.

pieces of Ezra

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…

two years

Two years ago today Ezra died.

The house still feels wrong without his voice. I sat in my office the other day and watched this video for 30 minutes on loop, crying and laughing. I miss hearing his voice.

You go through a lot of feelings when you lose a child. Then when you lose one again. Then when your remaining, third child, lives in a hospital for 7 months and fights like a madman to finally, after a year, breathe on his own while he sleeps.

We’ve been angry. We’re still angry; at cancer, at us not having enough research yet to cure this, at a world where this can happen to so many families, sometimes at God.

We’ve been sad – a deep, arctic sadness. Vast, cold, lonely… simple and sharp in its pain and so very cruel for that. It hides more as we get further away, but it’s never gone.

We’ve been grateful – for the time we had with Ezra, for all the photos, videos, and stories you and we share about him. For friends who make all the difference. For the incredible people we’ve met these last two years. For you, for reading this.

We’ve felt despair. Moments where the weight of feeling all of this is just too much and ‘overwhelmed’ seems like a word kids use when playing trains compared to the crushing depths our minds get worked up in.

We’ve been impassioned. Working on Because of Ezra we keep meeting these amazing people, some who’s kids are fighting neuroblastoma right now. Some who’ve lost children. Some who’ve beaten it. Some who haven’t had neuroblastoma’s evil hands on their family, but have connected with these stories and are fighting now with us.

Ezra lived 800 days. Robyn says they were the best days of her life. People say that all the time, of course, but I know they were for her – I’ve never seen her so perfectly happy as she was with Ezra.

One thing we’ve been doing in Ezra’s name is creating these videos to tell the stories of children like Ezra, who are fighting neuroblastoma now. We call the project 800days (800days.org), in remembrance of Ezra’s life. We’re doing this through Because of Ezra, and meeting these families has been excruciating and empowering at the same time. We’ve met families like Caden’s, Malia’s, Brooke’s, Emily’s, and Christopher’s. It is such an honor to be able to do this. It is an honor to tell these kids’ stories, to continue Ezra’s name on such an amazing way to fight; to work with people like Mindy Kaling who have been graciously pouring in support. Please – take a minute today to look at 800days.org and share the videos there. This is something we do Because of Ezra, and it is making a difference.

Robyn and I had a conversation earlier today about how telling these kids’ stories and working on Because of Ezra feels like a way of keeping Ezra alive. It’s how we keep his name being spoken, know his life is still affecting change, and feel like we are still being his parents, looking out for him. Telling stories like his, and fighting to stop this stupid cancer.

In January, day 1601 will happen. It will be more time since he died than his entire life. In 800 days, Ezra changed us forever. He is, and will always be, our first-born son.

I wish he was here this morning.

fields and friends

I mentioned to Robyn the other day how much I love the Pacific Northwest, and how I thought one day I’d like to live here again. We were driving south towards Seattle on I-5, and it was one of those drives where we’re both kind of just lost in our thoughts. Happens a lot for us. We drove along listening to the music for awhile, then Robyn said “but our sons are buried in Tampa.”

We’ve been thinking about neuroblastoma a lot lately – well, in between caring for Charley, who’s been in the ER twice this week for a virus which has left him with zero energy and a mouth and throat full of open sores. I’ve been thinking of how connected we all are in this crap. Monday we’re meeting some people we appreciate – Jeff and Carin Towne. Their 3 year old son Ben died of neuroblastoma in 2008, and they’ve set up the Ben Towne Foundation to honor his memory and fund research into new therapies. They just gave $5 million to a study they’re passionate about, in January.

Afterwards, we’re having lunch with our new friends the Shraugers. Their son Caden is using his super powers to fight stage 4 neuroblastoma at Seattle Children’s Hospital. We met them while launching our #nomorenb project, which is trying to tell these kids’ stories. They are strong, they are hopeful, and they are tired. They’re always smiling when we see them.

Friday Taylor Swift (what? ha, serious) debuted a song – called Ronan – which she wrote about our friends Maya and Woody’s son, who died of neuroblastoma soon after Ezra did. You may have read Maya’s blog. We’ve kind of fallen in love with the Thompsons. They even DROVE out to our first west coast Because of Ezra event recently in LA (all the way from Arizona).

Like a soldier who follows a scout back to an entire field of warriors, we can’t seem to find an end to these stories. Ezra brought us here. And every day we are meeting another name to fight in as well. It’s wearying, inspiring, empowering, and scary as hell.

As Ezra was going through treatment, I was tired all the time. Robyn and I both had this insane energy that somehow fueled us through every day, but whenever we had moments to ourselves… it was like we were just shells of people. Empty Taco Bell fire sauce packets. It was impossible to feel and impossible to think. Then the morning would come, or we’d leave whatever little room we’d found in the hospital to hide ourselves in (I’m pretty sure I cried, or just stood for a while, in unlocked supply closets a few times), and we’d snap back to ON. You don’t really have any other choice. Imagine feeling the strongest emotion you’ve ever felt, constantly, for 13 months.

When we walked into the ER with Charley (twice) this week, all those memories flooded back. At Seattle Children’s, we literally parked next to the RV Caden and his family are living in (in Parking Lot 4) while Caden is being treated. They left from Montana months ago to come to the NW, and Caden hasn’t been home yet. We walked into the ER, Charley got an IV going, and we spent 8 hours figuring out what was wrong with him. He’s fine – he has a virus which is giving him a lot of pain and sores in his mouth and throat, so I guess not “fine”, but it should go away in the next day or two. It’s nothing long-term serious. As we sat on a hospital bed staring at a screen with Charley’s vitals displayed in blues and yellows and purples, Taylor Swift’s song was released at the Stand Up 2 Cancer event, we downloaded it like millions of other people, and remembered why everything is harder for us now.

Every nb kid I meet reminds me of Ezra. Every sunny day reminds me of the field our sons are buried in.

Some things are important. Like seeing the battles going on in people’s families and lives, and doing something about it. I’m tired of living like islands. I’m tired of extra-curricular activities consisting 99% of selfish things. Things that make you feel good. Studying. A church service. A dinner out. Drinks at your favorite spot. I love all those things, and I mean, I’m way more appreciative now than ever of a mountain top, fresh air, a good book, or those things that take our breath away – but by God, let’s put some passion into addressing the hurt we’re surrounded with, too. For Robyn and I it’s kids’ cancer. Maybe it is for you, too. Maybe it’s something else for you. But please, know the world is much larger than yourself, and work to help someone.

You guys are all part of the reason we’re still here. Thanks.

Our love…

4

Happy birthday Ezra. What are we supposed to do? How do we celebrate your birthday when you aren’t here?

I can look back in this blog and see Christmas 2009, just a couple months after we learned you had cancer. We had Christmas at home, and you started your fourth round of chemo 3 days later. I see when we sent out your second birthday invite… so full of hope. The day of your big party – so much smiling… so many happy people. We were sure you had no cancer left. I remember the day before you turned two – the day after we had your party – when we learned you’d relapsed. Hearing – again – there was no known cure for relapsed neuroblastoma. We were sure we’d find a way – you’d be the one to throw your middle fingers to the odds.

I remember the day you died. Holding you in my arms. Your mom holding you. Thinking this couldn’t be real. Watching the heart rate monitor numbers get smaller and smaller. I remember your mom telling me to turn it off. I couldn’t believe the numbers wouldn’t go back up. I couldn’t think past the alarm – why would I turn it off? How will we know when the numbers go back up? You couldn’t be leaving – what would we do tomorrow? We still have to fix you – where are you going?

I remember we stopped and bought coffee at 3 or 4 AM on the way home from that night. I had no idea why we wanted coffee. I had no idea why we should do anything. I couldn’t feel anything. Your mom sitting next to me. Her shirt wet from so many tears. Our bodies so tired from fighting with you so long. You must have felt so tired for so long? Were they asking me questions about my drink? Why does that matter? Why does any of this matter?

I remember your 3rd birthday. Watching that video of you over and over and over again. I remember your mom and I trying to figure out what we should do for your day. How to… celebrate? Remember? What do we even call it? And then today – a year later. Those same wonderings. We won’t stop fighting your war on neuroblastoma – we’ve met so many families who are feeling this same thing. It’s not right. I’m so sorry you had to feel all that. I’m so sorry none of us could find a way to fix you in time. We miss you so much. We love you so much.

I woke up this morning to Robyn yelling my name. Charley’s MIC-KEY button had fallen out in the night – inside it had sprung a leak and the small water balloon that holds it inside him had emptied. The button simply slid out while Charley was sleeping. Which means the hole we place it through had been closing for hours while he slept. The MIC-KEY button wouldn’t fit back in. The same thing happened to the last one – so we have no extra. The last time this happened, Charley had to go into surgery to have the hole expanded.

We spent all day today trying to get the MIC-KEY button back in and couldn’t. Luckily we had a smaller tube we could put in so Charley could get his food and medicine. It won’t last though, so we may have to go in for surgery over the weekend to have the correct size and button placed.

We worked on that til 3PM, when Charley finally went down for a nap. He’s tired.

Ezra would have been 4 today. We were supposed to have a 4 year old and twin 2 year olds right now. We were supposed to be watching them from the kitchen window while Ezra played with his little brothers in the yard. We were supposed to be asking Ezra what he learned in pre-school.

We weren’t supposed to measure everything in ml. We weren’t supposed to have more medical supplies than children’s books. We weren’t supposed to know 20 families by name who’d lost kids to cancer.

Life isn’t the same. It doesn’t “just get better.” You know when you have a headache, and you find yourself more agitated than normal because there’s this pain that’s constantly gnawing on you? You snap easier, you have trouble focusing? We lost 2 of our 3 kids – that pain doesn’t stop. It changes, sure. We see beauty in places still. We smile still. We laugh. Through it all is this dull pain, this knowledge something is off kilter, something is missing, something has happened. Sometimes it gets sharp, and it breaks us for an hour, a day, a week. Our life is still full of medical issues – a simple mishap for Charley (the MIC-KEY button coming out) means we’ll spend all day tomorrow in the ER, and Charley will be getting surgery yet again, at 2 years old.

We are fighting to let people know about neuroblastoma and to cure it. People say “don’t tell the sad, tell the hope. No one wants to hear the sad.” But there’s no need for hope if it doesn’t spring from sadness. Hope is toward better. It comes from a place of worse. We’ll only get louder – this war can be won, by all of us. We need attention on it. We need people raising up fists in the face of neuroblastoma. Not afraid to be loud, to be persistent. Did you know we’re personally hearing about new kids with neuroblastoma almost EVERY DAY? We’re meeting families constantly? They’re all being told the same thing – 30-40% chance of survival. Once a relapse happens, there is no known cure. WHY WOULDN’T YOU SHOUT THAT FROM THE ROOFTOPS TO GET MORE ATTENTION ON IT? WHY IS IT “NICE WHAT WE’RE DOING?” This is a war, and if you have the ability to push the fight forward, we want you to do it. Tell the stories. Give toward the cure. Become a doctor. Share a link. Write to congress. Help us fix it – because of Ezra. Because of Ronan… Layla… how many names do I need to write? I can tell you dozens from memory.

Happy birthday, Ezra. We love you so much.