Charley. I wonder sometimes how he’ll feel knowing he lost two brothers without ever really getting to know them.

Charley is 20 months now – he’ll be two in March. He’s come a long way, and takes his time getting where he’d like to be. For the first 192 days of his life he was hooked up to monitors and machines in the NICU, living in a room with a number on the wall and doctors doing rounds every day. He had a bunch of surgeries, including multiple brain surgeries. He had a second mom named Casey – his primary nurse the entire time. We still keep in touch with her. He spent almost a year on oxygen, even at home (man are we glad that loud, loud, loud machine is gone – and so is Charley). He still eats through a tube – which we’ve actually gotten used to, and sometimes I think, “great, one of these days we’re gonna have to say ‘eat your beans, Charley, come on’ – ha.”. 🙂

I guess a good way to explain what “good” means when I say how Charley is doing is to go through a typical day with the little man. Charley wakes up around 9 in the morning (which is great for us) after getting a feed pumped into his G-tube (pics of that nifty thing later in the post) 12 hours overnight. Babies normally need to be burped, but Charley is “vented.” Burping a kid is simply patting them on the back in hopes the air trapped in their stomach will come up. For Charley it’s a bit different. First we disconnect his pump and pump line from his G-tube. Because Charley has a G-tube, we actually take a syringe of 10ml of water or so (oh, our life is very ml based, ha – 3 mls of this, 150mls of that, etc) and push it into his G-tube. Then, we pull back on it and both air and formula come back. We keep repeating this until all the air is out (usually anywhere from 5ml to 50ml of air), and that’s how you vent a baby. 🙂

After he’s vented, we get Charley up and change his diaper just like any kid waking up. Dress him for the day, and bring him to the living room. Even after being vented, Charley still has a pretty active gag reflex, and so we keep him upright and not bouncing or moving a ton for the first 20 minutes or so. Then he gets to play! Charley still doesn’t quite crawl – he can scoot backwards pretty well and side to side, and just the last couple weeks can move forwards as well, although he uses his arms more. Charley is still working on some of his muscle tone since he was born so early and spent a lot of time laying in the NICU. As a result of this it can be difficult for him to stand straight (he sticks out his butt to prove he’s bootylicious), and a lot of other minor things (when he claps, he only moves one arm – the other stays there waiting for it’s mid-five).

At 11 Charley gets Prevacid via the G-tube to help with reflux, and twice a week he’ll also have his speech therapist come in, who has nothing to do with speech, ha. She works with Charley helping him get used to tasting (we’re talking very tiny bites of baby food), used to smelling food, touching it, and she exercises his mouth. Once it’s been this long without eating, you have to teach someone to eat from scratch. After speech, the physical therapist comes. She works with Charley to make sure he’s working the muscles he has issues using, stretches him in ways he should be able to but doesn’t do – gets him used to correct movement.

We take a lot from the speech and physical therapist’s instruction, and try to make sure what they do is also getting done daily for Charley – practice, practice, practice. At 1 Charley naps, again with a feed running through his pump (it sits on a medical pole and pushes the formula through the tube right into Charley’s stomach). He gets a feed again at 6 while he’s awake, and another at 9 when he goes to bed (that feed goes for 12 hours at a slower pace). Our kitchen counter space is covered in tubes, syringes, and formula bottles.

Charley will wake up by 3, and hang out playing and scooting around the floor for a bit. Sometimes we’ll go on a walk with him and Jack (our boxer) around this time.

At 7pm the nurse arrives (Charley’s doing so much better we’re down from 24 hour nursing to only 8 hours a day – they stay from 7pm to 3am), and helps with therapy, bathing, and setting up the night feed. She also will vent Charley, change his diaper, and refill his feed throughout the night. Every night I wake up at 3am and let the nurse out (they are required to “give report” which is lame – it’s usually just “he’s slept fine, please sign” – something which could totally be done the next day, with a knock on our door if there IS an issue).  Aside from a couple times when we travel, I haven’t slept through the night in a year.

Charley loves bath time! Every day at 8 or 8:30 is bath time, and he has a blast. 🙂 By 9 he’s hooked up for his evening feed, and hits the rack for a solid 12 hours. YES.

The cheeks on Charley are the kind an aunt would grip and never let go of, ha. Babies usually lose these cute cheeks somewhere in their second year, as they begin eating more and their jaw is used. Since Charley doesn’t eat, his jaw doesn’t do much right now – leaving all that cute baby fat in his cheeks. We’re also working with an opthamologist who sees Charley about his eye. Both eyes have great vision, but also due to the premature birth, his right eye is very lazy (he wears an eye patch 3-4 hours a day in hopes to adjust this). Even with the patch, the doctor seems to think sometime in 2012 he’ll need surgery to correct this, where they actually surgically strengthen the eye on one side, and weaken it on the other (muscle, I mean, not vision). This straightens out his eye.

All of this has made Charley a very independent guy. He’s becoming a little more used to cuddling or hugging, which is nice, but never really was into that. He liked being held, but didn’t melt onto you like you expect a baby to. Eye contact is tougher for him. So far his life has been a collection of issues he’s been overcoming quickly, slowly, constantly. I’ve said before – most babies spend their first year laughing, learning to crawl, eat, etc. Charley spent his first year learning to breathe. He’s a tough cookie, and we’re looking forward to see the boy and man he becomes. You can see him getting stronger all the time – and he’s already covered in scars which I’m sure chicks will dig from all his surgeries in the NICU and first year. Doctors seem to think by the time he’s 3 or so, he should be developmentally caught up with “normal” – as if anyone in our family has been that. 😉

At times it can be difficult with Charley to see the baby boy behind the collection of medical issues. Lately, though, he’s been laughing more, smiling more, and becoming more mobile – he’s strong, and the more he overcomes his medical stuff, the more we see his personality and the kid himself. Abby is over a lot as our official “please watch our kid so we can get dinner out!” lady, and seems as much a part of our family as he is. She watched Ezra often during treatment, and helps out a ton now as well. We think she’s great.

Well – there’s some insight into Life With Charley. Thanksgiving is coming soon…

written for an old man, but brought me memories only of Ezra

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Do not go gentle into that good night / Dylan Thomas

 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…