a spade a spade, a heart a journey

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…

events and news

Hey there!

Since we don’t yet have our news and blog section up on BecauseofEzra.org, I’m sharing with you here about what’s going on. Hope you don’t mind. 😉

We just got back from LA yesterday, and had some great meetings with people we’re incredibly excited to be partnering with in Because of Ezra. We have some really cool big events planned for this year, from coast to coast. I’ll continue to share as we get more details secure, but man are we excited. It’s looking like we’ll be able to really affect this horrible cancer.

Speaking of events – if you live local, you can help out this coming Thursday just by eating! A really cool couple of young ladies named Savie and Molly called up Red Elephant here in Tampa (near Dale Mabry and Bearss) and for anyone who eats there (or takes out) this Thursday (the 27th) and mentions they’re there Because of Ezra, Red Elephant will donate 15% of their ticket to the foundation. Savie and Molly also sold bracelets of their own accord at their school late last year – thanks, girls!

We’re still planning on running the Gasparilla Distance Classic in February, check out our last post for details – we’ve got the t-shirt designs in and finalized – check it out:

See ya around…

come run with us, and other updates

Thanks to our good friend Mandy we’ve now officially entered our first 5K run to benefit Because of Ezra (among others). If you live in the Tampa area, come out Saturday, February 26th for the Publix Gasparilla Distance Classic run. Most of us will be doing the 5k run – but if you’re not a runner don’t let that discourage you! They also have a 5k walk, and even a 5k stroller walk. They’ve also got longer runs if you’re one of those crazy runner folk. Since we’d love to get a ton of folk out there running to support Because of Ezra, anyone who donates more than $25 to Because of Ezra during the registration process will get a free tshirt to wear race day! We’d love to see lots of people running with BoE shirts.

When you register for the race (which costs $25) through this link, there will be an option to choose if you’d like to ALSO donate to a charity. Choose Because of Ezra, and if you give $25 or over, let us know your tshirt size and we’ll have one for you a few days before race day! You’ll need to either Facebook us or email us using the contact link on the right of TheMatthewsStory.com or on BecauseOfEzra.org. Some have asked if it’s better to give directly to us than through the registration process – if you are actually planning on doing the race, then no, it doesn’t matter. The run doesn’t take any percentage out, so 100% of the charity donation you send to Because of Ezra comes to us. The $25 registration fee of course goes to the race.

In other updates… well, there’s so many. We’ve been busy little bees, trying to work as hard as we are resting. Charley is doing great, he has grown so much, and he is developing well. He’s a stubborn little boy with a hidden smile, but he shows it if you work for it. 🙂 Our nursing is most likely going to be cut back from 24 hours to 8-12 (daily) at the end of this month, and so Robyn will be working even more with him. We’ve been blessed to have had this coverage the last few months – they were rough times for us, and the nursing coverage was so appreciated. Things are still hard mentally and emotionally, but we are gathering ourselves together best we can. Life doesn’t seem to take any breaks.

Because of Ezra is shaping up very fast – we’ll be in LA in 2 weeks to meet with the folks of NANT, as well as some folks we’ve been emailing quite a bit who it looks like will be a big help in this adventure. We’re working on a lot of new content for the website (becauseofezra.org – btw, are you our friend on Facebook? 😉 you totally should be…), and shaping up some very cool things for the rest of this year. Lawyers, doctors, and volunteers – oh my! We’ll try to update here as well as through the Because of Ezra Facebook page as we schedule more things – but it’s an exciting time. We will be effective at pushing awareness and funding into this cause. Did you know of the money the US government puts into cancer research, less than 3% goes to pediatric cancer research? ALL pediatric cancer? Drug companies don’t do much either, as pediatric cancer is much less profitable than adult cancer. Wow, huh?

That’s enough for now… there’s so much to share, but I’ll let you know more as we get everything more solidified. I miss Ezra every day, and we are committed to doing all we can to stop other families from having to feel this.

so this is the new year

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!

becauseofezra.org

We are hard at work gearing up for 2011 and launching into our new foundation. We have been chatting with lawyers, doctors, and supporters every day recently, and are really excited about the buzz over Because of Ezra. We just today released stage 1 of our foundation website, and you can see it at becauseofezra.org. It’s a little light on content, and we will be adding more information as January and February come, but we wanted to get something out there this year! If you’re on Facebook and you haven’t yet, you should “Like” our foundation page as well!

I just wanted to drop a note saying that, it’s exciting for us. The St Pete Times is also running a story on Ezra’s life, which will be in tomorrow’s paper (Friday) – you can already view it online here.

Charley is doing great! He keeps growing like normal, and although he still has oxygen and his feeding tube, he is a happy boy and babbling a lot. 2011 is looking to be a good year.

thankful

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.

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.

interim

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.

celebration of life

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.

Ezra David Matthews

Ezra died this morning.

I never wound up going on that bike ride – Robyn called me Saturday night saying Ezra was getting worse to the point the doctors and she thought I should be there. I drove back to Orlando. Ezra was hurting from the swelling in his abdomen, and his morphine was upped to keep him comfortable Saturday night. Yesterday, Sunday, we knew he was slowly shutting down. My family came by the hospital, and so did Robyn’s. It really was a beautiful day… a lot of laughing, crying, and loving on Ezra. By 9pm or so, everyone had gone home, and Robyn and I went to sleep. Ezra was on a 98% oxygen flow, and his oxygen and heart rate numbers had both been slowly dropping all day.

At 2:40am we woke up to his monitor alarming a low heart rate; it was 50 and slowing. We curled up in the bed with him, praying, kissing, holding, and talking to him. By 2:50 he was gone. We lay there with him a while, then started packing up the room to go home without our son for the second time this year.

I am a better man for having had Ezra as a son. Robyn is a better woman. Over half Ezra’s life was spent battling this cancer… living in hospitals… and yet I’ve never met a child as giving, joyful, thoughtful, kind, and fun as Ezra was. I hope I can live a life showing that much inner strength and character.

I wish you could have known him more. I feel this blog/CarePages has been a powerful tool – in the past month over 100,000 individual people have visited this site, every one touched by Ezra’s story somehow. Emails have poured into our inbox. Packages have flooded our mailbox, and the hospital’s. I can never sum up my son with words on a screen, but I pray you got a piece of his personality through this. I hope you felt you knew him. I hope you feel the pain and joy this past 13 months has brought us. Ezra is someone more people should have had a chance to meet.

We do not see the end of the fight against cancer here for us. How many more families are in the middle of this right now? How many will be tomorrow?

We will be having a celebration of Ezra’s life, we hope this weekend. I will update here with information when we finalize those details.

Please, be changed because of this. 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.

2 Timothy 4:6-8 “For I am already being poured out as a drink offering, and the time of my departure has come. I have fought the good fight, I have finished the course, I have kept the faith; in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing.”

We miss you, Ezra.