I often find myself unfound.

Sometimes it’s while I’m driving, and I suddenly realize I’m not focused on anything, not hearing or seeing what’s in front of me. Sometimes I’m sitting on our back deck, with a book in my hand, and 10 minutes has passed without me reading a word. These moments I feel our losses so fully, so closely. I miss Ezra so much my body simply can’t process anything other than this feeling. I feel the empty place Price was to fill. It’s like my senses are fighting for my attention, and for a moment they all lose to this one feeling. It’s that tightening of your chest, that feeling you got in your youth when you realized a cherished relationship was over, or when you admitted to or were caught in a crucial mistake which you were powerless to change. But it’s heavier than that ever was.

It comes and goes.

Strange how a thing can have been so far from you your whole life, and suddenly be everywhere. I’ve met so many people these past 9 months who were affected by cancer in a personal, deep way. Today I have been reading the blog of a family who lost their beautiful daughter Tuesday Whitt. A family we know lost their father/husband to cancer. Another friend had their son diagnosed with leukemia. My inbox has flooded with references to neuroblastoma families both in treatment and out, living and lost.

I spent this weekend in Denver, as I do monthly or so since my business partner lives up there and we have folks working for us in the city. Sunday evening Robyn and I went out to a nice dinner. We were on our way back to our good friends’ house, who we were staying with, when they sent us a text saying their friend was in town and would be stopping by. Turns out it was a guy I’d met nearly a year ago, only once. Let’s call him VJ. He was diagnosed with a fierce, rare bone cancer just this April. We stayed up late talking about life, cancer, and how they’ve combined for us. VJ was thin, and had that hairless going-through-chemo look. He reminded me of Ezra, and how delicate we all are, and how vibrantly strong we all are.

Ezra died at 2 years old, and we were never really able to have a conversation with him about how it all felt, or what he was thinking. We could tell when he was hurt and many of his feelings, in that way a parent can… and I think something deeper, too… but never an adult conversation. I know it’s different from a 30 year old man to a 2 year old child, and I know some things simply never registered to Ezra as abnormal (he spent more than half his life in hospitals; learned to walk in them), but as I listened to VJ talk I kept thinking of Ezra.

I have noticed changes in the way I interact with the world on every level, and I asked VJ about this. It’s all shaken us up to a thought: either there is nothing that matters, or everything does. It is possible nothing matters – could it be we simply exist without meaning and any attempt to romanticize this life is vain? I’ve considered it. The alternative, I find, is only that everything matters. I can’t rationalize a medium. It seems every moment should be relished, each a part of something so boldly beautiful as life. So brashly present. Rest should be well spent and welcomed. Those in need should be given to. Beauty should be pursued. Pain should be felt, not pushed aside. We should see with fresh eyes a world which is astounding. We should feel music. We should lose ourselves in an afternoon with a loved one; we should invest in our friends; we should set ourselves to love the broken, the homeless, the lost. We should step into the heat of the sun and soak it in; we should shiver in the cold and marvel at the clarity of the air.

VJ called it a “come to Jesus moment” when he first realized all that.

I very much fail at doing it. I set these thoughts at the front of my mind, and all I can do is approach each day with God’s grace and strength and a focus on living that day. Which doesn’t have to mean a huge day, but an appreciation of what happens in it. A heart embracing both pain and joy and seeking out beauty.

Sit with me and tell me once again
Of the story that’s been told us
Of the power that will hold us
Of the beauty, of the beauty
Why it matters

Speak to me until I understand
Why our thinking and creating
Why our efforts of narrating
About the beauty, of the beauty
And why it matters

Like the statue in the park
Of this war torn town
And it’s protest of the darkness
And the chaos all around
With its beauty, how it matters
How it matters

Show me the love that never fails
The compassion and attention
Midst confusion and dissention
Like small ramparts for the soul
How it matters

Like a single cup of water
How it matters

Why it Matters / Sara Groves

 

When you meet someone, there are two and a half common questions you ask. “What do you do?” and “Married? Kids?” These are common questions which we ask because they’re “safe.” Questions which give us a quick, mile-high overview of where a person is in life. These most basic of questions are a daily strange moment for parent’s who have lost a child. Do we have 3 sons? 1? People tell us “you’ll always have 3 sons.” But we don’t. I’ve become comfortable in saying “we had 3 sons, and lost 2.” It invariably brings that instant sadness to the conversation, but loss and life are all in the same bag – I smile and the conversation moves forward.

Death is an awkward thing. It’s ugly and beautiful; it is relieving and straining. It makes us think so heavily about who we are and why we are. From my experience and the words of people I’ve spoken with who’ve felt this and had much more time to move through it, it seems the questions we ask after we’ve seen death are answered with journeys much more than facts. It opens my eyes to the world around me, but it makes me so sad with every beautiful new thing I find, realizing two of my sons will never see it.

Hi guys. 🙂 I haven’t posted since February. We’ve been intensely busy working on life, Charley,  church, Because of Ezra, and each other. Things are going well. I mean, from the high level explanation, yes, they’re going well. I mean, we’re all broken, we’re all hurting, we’re all needy and offbeat and different, but we’re good. Charley is great – he’s now completely off oxygen. None at all. His neck muscles are much better – he looks left all the time (never really did), even though he still looks to the right as his default stance. He’s working on his right eye. It goes lazy a lot, but time will fix it. He still eats from a tube, although he takes tiny bits by mouth now (we’re talking milliliters). Things are slow with Charley. It is frustating sometimes, but the kid is awesome, and will only get more so as he grows.

The foundation is moving along. We’ve got a great motorcycle ride coming up May 7th. Robyn and I have been meeting people all over the country involved in beating neuroblastoma (I refuse to capitalize that word), I’ve been playing music whenever I can, and Robyn and I talk often about our hurt, thoughts, and things we feel God is showing us. We spend a lot of time with various close friends chatting about life. Whoever your friends are – invest in them. Love them. These relationships are important in your life, I implore you to make them a priority.

I’ve started a book about Ezra’s story (and ours, I suppose). Well, I’ve created the Pages doc at least. 😉 I plan on filling it out… let’s see how that goes. Life is full of so many options still, which is nice. This is Easter week, and I wonder during these days how God felt when He lost His son. I wonder if He felt this empty space.

Thanks for reading.

It’s Friday, and it’s noon as I start this blog. People often ask how we’re doing… I figured I’d write something up. This update will mark the end of me using CarePages for updates – CarePages is for patients, and we are no longer that. If you’ve been following our story via CarePages, please subscribe to TheMatthewsStory or BecauseofEzra for updates going forward.

How we are requires a fluid answer, and I will write my thoughts today… it will be a read. Feel free to skip this update if you’re not into self-reflection and/or spiritual thought.

There’s not a word that describes “how we are”, and “how we are” changes quickly and often. Robyn’s mom told her from a very young age there’s no “right” way to grieve. Grief classes and groups will all give you their preferred book, worksheet, or tip chart, etc.  The reality is every situation is so different, even when it’s the same – no one shares the exact same history and situation, and we all react differently. Personally, I am compelled to do a few things. I look inward, trying to make sense of the questions and loss. I look toward God for answers, but I think I will eventually receive peace rather than answers. I try hard to make myself available to my wife, who has her own set of thoughts to move through. She and I need each other’s brokenness and strength equally, to both open the door to express these thoughts and to step one foot forward after the other. Love dictates we don’t tell each other what to do, but stand next to each other as we experience this, talk it through, and let each other know it’s alright.

Our struggle is just as real as yours – I believe it is in fact the same – and we fail just as any man or woman does. We live life attempting to understand more, and trying to be a better person today than we were yesterday. We all shortchange ourselves by trying to define where we are or where we are going – we should find peace in the motion of life, in the stillness of life, in the search of God (not for).

So how are God and I? I almost decided not to write this thought process, as I’m not sure you actually mean it when you ask. It’s easier for people to see us as people who simply continue to believe God is good despite all we’ve been through, and write our whole story off as a sad and inspiring story of faith without question. It would be unfair to you for me to say I don’t struggle with the outcome of this past 14 months. I come from a background where I’ve seen miracles happen, and I have a strong foundation of knowing God is real. So how do I reconcile that with losing two sons? How do I explain the tens of thousands, perhaps millions of prayers which were directed toward God asking for healing in Ezra and Price, and then losing them? Is there such a thing as the Christian cliche of a “hedge of protection” (which comes from Job 1:10)? Is nothing promised aside from Heaven?

Some of you will be disappointed or offended that we question these things. You’d be surprised just how many people are ready to tell us how to feel and think. But some of you need to hear it. Need to hear it’s ok to question. I heard a quote once which said something like “if you’ve never struggled with your faith, I doubt you have any.” I’ve heard it called foolishness – this faith, this belief in who God is despite the inability to answer the questions of “why” we all have. Why did Abraham get to keep Isaac in Genesis 22, and I didn’t get to keep my own children? We all have these questions – my childhood best friend’s dad died after 3 years of living in a coma. Robyn’s dad died of cancer when she was 9. How many died in Haiti? Ezra, Price… Layla Grace… we all have a story (at varying levels of personal involvement) of tragedy which we have trouble reconciling with who God is. And yet, I have felt Him. I have seen God move, and continue to believe He is real, and is in fact who the Bible says He is.

The problem we have is this picture of God as Santa Claus. This creeping, far-reaching, poison philosophy that an insistence on God, a life dedicated to a continual focus on Him, means nothing more than a free ride to Heaven and a sense of superiority in our “right” decision. Blessings and safety in everything we do. We’ve turned God into a seminar on sociology. We go to church to learn how to be a better citizen, rather than to be challenged to have the mindset of Christ. We define our views of people based on how they fit in our checklist of what a “good” person is, instead of realizing Jesus would probably much rather be hanging out with the ones we write off. We feel good that we’re being good, and pat ourselves on the back for filling the parking lot once a week to watch the lights and hear the band. We tell each other how challenging the “word” was, and we ignore the injustices of the world another week and show back up next weekend. Tony Campolo put it interestingly. He stated a fact – 30,000 kids die daily from malnutrition. Then he cursed from the pulpit, followed by saying what’s worse was more people were bothered by the curse word than the 30,000 kids. I’m not advocating swearing from the pulpit in referencing that – I’m trying to illuminate this false priority we put on fitting a checklist of don’ts over living like Christ and bringing relief to the hurting in our lives.

Let me beg you to go read Isaiah 1:13-17 and Acts 2. I feel just as guilty as anyone – but if you ask me what I’ve got through this thing we’ve been through, one sure takeaway is to call a spade a spade. To ignore this mandate to be societally correct, and instead to live like I believe. Can we all please stop picturing a church, and be the church? Jesus’ disciples were mostly people we would be uncomfortable with on the staff of a modern church – look up their histories. JESUS would probably be laughed out of most board meetings.

Anyway… so I guess we’re “alright.” Charley continues to do awesomely. The Because of Ezra foundation is shaping up to do some awesome stuff. My business is growing a ton this year and I enjoy putting time into it. Weather is good, and many of our friends are starting 2011 with good new ventures that are doing well. I am always excited to see people doing well. There’s pings of jealousy when I see a healthy family in the park, as I’m sure you get when you see success in any areas you’re struggling in – but I work to be disciplined in “capturing these thoughts” like 2 Cor 10 says and always be excited for the good in people’s lives, as I am for the good in my own. You know – it’s good to be healthy (not just physically, I mean spiritually, maritally, financially, etc). Be glad when you see it in folks’ lives. Jealousy is worthless.

Until next time…

It’s 2011. A new year. This past month Robyn, Charley and I have been getting some rest and doing our best to enjoy the holidays. It’s been difficult, but we’re surrounded by a large group of loving family and friends who’ve been more help than they’ll probably ever realize. We took a vacation. We danced in friend’s living rooms to celebrate birthdays. We crammed 17 people around a wooden table for Christmas and smiled, laughed, and shouted to pass the baked feta. We walked around the world at Epcot for New Years and celebrated in each “country” at the time it was turning the year there. Robyn and I have cried both by ourselves and together deeper in this past 6 weeks than we have in our entire lives. We’ve felt an intense bond in our love grow as we feel this together.

Charley is doing so good! He is still on oxygen, but has been able to be off an hour daily, and he has no issues when he’s off it. We have another appointment for him the end of this month where the doc thinks he’ll probably be completely off oxygen, or at least during the day (might still need it while he sleeps just as a precaution). He’s getting better at taking the pacifier again, which is good – from there we can start working on getting him to take food or bottle by mouth. He’s nearing 20 pounds already, and still wearing the same size diapers Ezra did! My mom likes taking him out through the neighborhood on strolls when the weather is nice. Charley is babbling a lot now, and his little personality is showing itself all over. He’s an obstinate little guy, and we love it. He puts up with a lot! With many babies the hardest thing their day consists of is laughing – Charley has spent his life having his most difficult thing being to simply breathe. Typical things we take for granted like breathing, eating, and even moving your head around are difficult things for Charley. He is overcoming them well and it looks like there will be no permanent issues at all, which is a miracle in itself, but it is a long road of a lot of work for him. The worst bit is already behind him though. He smiles every time he gets a kiss on the cheek.

We had set up the Because of Ezra foundation early in December and set it aside for a month to do our vacation and holidays. We’re now in January and ready to pour into the thing – flesh out the website a bit more, and begin making solid steps forward. We will be meeting with a few doctors this month to clarify direction in some areas, and are flying to LA in a few weeks as well to meet with some really cool folks who are going to be a part of the fight with us. We’re very excited about the future of Because of Ezra – I know it is going to have a significant impact on raising awareness and pushing funding towards a cure. Many of you have emailed in asking how you can help – we’ll be finalizing a lot of those details this month too. 😀 We have a ton of ideas and we’re looking forward to making them happen, and having you all along the way with us. I’m also looking at writing a book of Ezra’s story this year. There’s so much to do!

The pain of loss doesn’t get any easier. Folks say it hits you less often, but the pain is the same. It’s a deep, gut-wrenching feeling of wanting something so bad and realizing you can’t have it. God promises we’ll see Ezra and Price both again, but never in this life, and that pain hits at the strangest times. Sometimes for a minute, sometimes for an hour. 2010 was a hard year. And not just for us – all around us we’ve seen hurt, confusion, and doubt. Pain has littered the lives of so many we know, and although I know a life without pain is a life without understanding of joy, I can’t help but ache when I see everyone’s struggle. In the New Year, I hope you do make your resolutions to get up on your fitness and all the typical ones. Your body deserves to be respected – God calls it a “temple of the Holy Spirit”. But more than that, I hope we resolve to pay attention to the people around us and care. I said the morning Ezra died – “Recognize the flawed world we live in, and work to help the ones you can. Really work. Recognize the hurt in the world, and recognize the grace that gives us a chance to still be beautiful.” I say that in my head every morning, every day. As we are all in reflective moods this week now that the year has turned, I pray that challenge will find a deep spot in our characters.

Truly, you are all incredible, and I thank God for you all often!

Today is day 817 – our first Thanksgiving without Ezra. We are thankful for so many things. For 800 days of being given the incredible gift of caring for a beautiful and unforgettable son who has changed our lives forever, as well as many others. For God’s grace and hope which gives us strength to cry together and know that we will be ok. For Charley, another son with an incredible story whose smiles and laughs are already beginning to fill our home. For the hundreds (probably thousands) of pictures and video we all took of Ezra which remind us always of his smile, laugh, and personality. For the friends and family which these past few weeks have filled our life with their shoulders, arms, and love. We are thankful for family which will surround us today with smiles, cranberry sauce, and turkey with great stuffing. We are thankful for you – you who have been reading our story, commenting to us, emailing in, sharing your pains and joys as deep as ours with us. You who opened your heart to tell us how our past year has reminded you, instilled in you, challenged you, or changed you in some way.

Today is day 817, and we are thankful.

I wanted to also share with you about the status of our foundation. Things are moving very quick, and we are super excited. The foundation is called Because of Ezra. Above you can see our logo and a bit of our splash page. We are in the process of designing the website now and also doing all that legal mumbo jumbo that comes when setting up a new foundation – getting the tax-exempt status, writing by-laws, consulting with drs and legal folk about HOW best to assist in a goal of curing pediatric cancer… it’s all sorts of fun. 😉 I’ve been running around like a headless chicken working on how this foundation will work, look, and affect.

In all seriousness – Robyn and I feel strongly we can all affect pediatric cancer. Ezra’s story has opened our eyes to a world we barely knew existed outside of cute St Jude’s commercials and random charity letter mailing blasts that hit our mailbox. We have seen the battle in the sleepless puffy eyes of parents on the oncology floors. We have seen it in mothers sitting quietly watching their children sleep. We have seen them fiercely advocating for their children in pain. We have seen it in the stubbly faces of fathers traipsing to the family fridge in the PICU. We have seen these things in ourselves as well.

I know I’ve mentioned this before… I know I’m being a bit redundant. This is stuff that’s burned in us, though, and we know we can make a difference here, with a ton of help of course. Robyn and I know this is something which CAN be fixed. It takes time, awareness, and research. But families don’t have to go through this forever – a cure can be found.

From the Matthews Family,
Happy Thanksgiving.

Yesterday’s service was a moment Robyn and I will never forget. I walked into the sanctuary and saw a wall of balloons 20 feet high and 80 feet wide… with dozens of huge flower arrangements… a slideshow of Ezra playing… and then my eyes settled on the box Ezra’s earthly body will rest in from now on. I stood there and cried. I miss him. It hit me then he isn’t coming back. I know he’ll never leave us in our thoughts or actions, but we will never again see him here.

It was a beautiful day with nearly a thousand people in attendance. Robyn and I are honored to have had so many of you there. Dozens of you have emailed in – yes, we did shoot the entire service on video, and we will post it later this week for those who missed it. Friends and family flew in from all over the country. Friends and family here and from everywhere flooded our home with flowers, food, and cards.

I have said this before, and will mention it again as it’s heavy on my mind. I have spent over a decade heavily involved in the church, and I’ve seen how easy it is to lose our focus on living like Jesus did to a focus on programs and schedules. It’s easy to take the injustices done against us by Christians and twist them into something done to us by Christ. It’s easy to watch hypocritical hurting people like we all are judge others and in our own mind create Jesus with that same character. Some people call it being jaded.

In 14 months of struggle I have cemented in my mind the importance of living like Jesus did. I have been slammed to the floor with tears and questions time and again, and been awed by the generosity we’ve been surrounded by. I have stood back up constantly, and stayed standing the times I have by grace and love. I see the incredibly deep need for us to care for each other. For me to care for you, and you for me. I mean this in a global sense, not specific to myself. I want to thank you all for caring for my wife, my children, and myself. It comes in many forms, and we each reach out as we can. All you do impacts. I personally read EVERY one of the thousands of total emails, comments, and messages which come to us. You’ll have to excuse my lack of response if it was your experience – I simply can’t keep up with responding. Know though that we read these, and we keep them all. We’re incredibly grateful to all of you.

Many of you have approached us with fundraiser ideas, pledges to help, and actions you’re going about doing already to help the fight against childhood cancer. We are awed and feel a part of a move which will affect that battle heavily and positively. We ARE going to be starting a foundation to channel our efforts, hopefully by the end of the year. First we need a few weeks break. 😀 We’d be honored to have you fighting with us then. Once we’ve rested, we will put together something which I hope you will stand with us in to directly push towards a cure for childhood cancer. I hope you’ve seen it’s face, and I hope you’re angry. I hope you’ve seen it’s not always smiling children on a commercial, but is also broken families, extreme struggle, and painful loss. I hope you also know this is NOT an unbeatable foe. Many cancers have gone from a 50% survival rate or less earlier this century to close to 97% now. It just takes attention, time, and proper funding into proper research. We plan on working hard to make sure the focus is put in correct places, not just “cancer” as a broad term.

You should see Charley. We’ve been home(ish) this past week – well, crazy busy with planning Ezra’s celebration service, but home much more often than we had been. Charley is stronger than ever, over 17lb, and wearing the same size diapers Ezra did. He’s smiling a lot, and babbling like no tomorrow. He’ll most likely no longer need oxygen support by early December. He’s taking little bits of liquids orally now, so we’re moving towards getting the pump feeds to not be necessary. He is a good looking, strong little man. 2011 will be a strong new year for our family of 3.

A day has passed since Ezra died. Thank you so much to everyone who has sent their love to us. I wrote the post yesterday about Ezra’s passing, and we went straight to sleep. By the time I woke up we had 500 emails in our inbox. Thousands of people shared the links on Facebook. More than one person who’d been following our story from various states told me they went to work and someone at work showed THEM the links to the blog. Emails came in from Kenya, Ireland, Dubai… the list goes on. We are humbled.

We will be having Ezra’s celebration of life service this weekend. I would like to invite all of you to come. Whether you have met us personally or not, you knew our son by reading this. Your prayers gave us strength during this past year. Your lives have been touched as well. We welcome anyone who’d like to come and celebrate Ezra with us.

The service will be as follows:

Saturday, November 13th
Grace Family Church
Main Sanctuary
5101 Van Dyke Rd
Lutz, FL 33558

12:30pm-2pm Visitation with Family
2-3pm Celebration of Life Service for Ezra

We will be having a private family-only burial directly after the service, so please make sure to arrive by 12:30 to visit with us. When you drive into the church, head to the large building farthest away from the entrance to the church off Van Dyke. We are asking people NOT to wear black – we want a vibrant, happy celebration of the constant joy Ezra lived with. Wear some boyish colors. 🙂

If you are flying in, you’ll want to come in to Tampa International Airport. It’s about 20 minutes from the church. We do not have any hotel or car arrangements, so please make your own arrangements. EDIT: We do have a hotel which is about 45 minutes from the church and our house in Clearwater which is offering to put up any out of town guests for the weekend. Please email us if you would like to take advantage of that by clicking the “get ahold of us” link on the right of TheMatthewsStory.com.

If you would like to send flowers, please send them to the church on Saturday, and have them delivered by noon on Saturday.

Funeral and cemetery fees are a reality and already well into the thousands of dollars, and if you’d like to give to us for that, feel free at thematthewsstory.com/give. We are also planning on starting a foundation to fight childhood cancer and fund research, and we will continue this blog to let everyone know as we move forward with that.