how’s Charley?

Choosing dinner

Let’s talk about Charley.

This kid is 4 months shy of 5 years old, and an absolute joy. If you say “cheese!” he drops everything and poses with the biggest grin you’ve ever seen. He tickles back. He gets back up after every fall, and he falls a lot. Unless there’s a bump on his head, on his way back up he’s smiling and determined. He’s got stronger abs than I do.

Charley has had, when compared to other kids his age, a tough coming up. He spent 7 months in the NICU at All Children’s in St Pete (we love you, ACH!), and was on oxygen for another 5 months when he finally did come home. We barely went anywhere with him – it required lugging an oxygen tank connected to his face with a tube and a nasal cannula, and we spent more time explaining than doing anything else when we were out. Not to mention having the entire attention of every single person we passed.

He didn’t eat for years by mouth, and still has a MIC-KEY button on his stomach and gets his feeds pumped in. He’s getting better now – having his tonsils removed helped this year – but the doctors think it will be another couple years before he’s fully eating by mouth and can have the button removed.

Charley’s legs hurt all the time. He’s got mild cerebral palsy, which causes tightening of the muscles. Luckily for him, he retains most of his muscle flexibility, but his legs are the worst. He’s learning to walk still, at 4, but it’s made tough by how tight those muscles are – he has to walk everywhere on tip toes. We’ve tried leg braces, but are now looking into Botox injections into the muscle to calm it down. Apparently it works well. If it doesn’t, in a year or two he may need surgery to help keep those feet flat. We’re hoping to avoid that – and you can see he’s walking much better and farther than ever.

Playing some golf with Brighthouse

Look at him walking!

Still, Charley smiles constantly. He is behind in many ways, but not when it comes to joy. He dances when music comes on. He’s singing along now, and loves to shout from the back seat which direction he wants us to turn at every red light. When a truck stops in front of us, Charley yells “Go around it!” He takes pictures of himself on every iDevice he gets his hands on, and then closes all the apps out by double-clicking the home button and swiping up on all the open apps.

He laughs a lot. Robyn knows his ticklish spots, and gets him every day. He will laugh for a good while then say “stop it!” He can tell you what color our cars are by memory, and knows the directions to Rocket Fizz – our favorite local candy store. He loves Mickey Mouse, Buzz Lightyear, and Magic School Bus.

We have learned a lot from Charley these nearly 5 years. He, like us, smiles through pain. He is strong and caring and curious, and determined despite constant frustrations his own body forces on him. He knows other kids are walking better, and you can tell the days it’s frustrating to him. Still, he gets up every time he falls, and asks for help or tries again.

He helps mama brush her teeth, and is starting to make jokes (although I don’t think he always know they’re funny, ha) and “say the darndest things.” Some of my favorite moments with him are Saturday mornings cuddling on the couch watching a movie while he’s getting his morning feed. Or watching him wrestle our boxer, Jack, who is the picture of patience and the perfect dog for a 4 year old. When Charles moves back in, I am sure the two of them will continue to have a great relationship like they have had.

Robyn works hard on Charley – he is a lot of work. Though he makes it a pleasure to do, he requires hip x-rays, neurosurgeon updates (for the shunt in his brain which will stay there for life), gastroenterologist visits (to check his MIC-KEY and how he’s eating), swallow studies, physical therapy weekly, speech therapy weekly, occupational therapy weekly, eye dr appts, and a host of other specialists and professionals helping us get him caught up. He may never be the fastest runner, but he will be the most determined. Our team of care professionals seem to think by the time Charley is 7 or so, you won’t be able to tell he was any different than other kids. Well, as far as development goes – obviously he’s much cooler. 😉 It used to be hard to believe that – he seemed so far behind. But lately, we’re constantly amazed at what he knows and how much he’s growing. He’s going to continue being incredible.

You deserved a glimpse of the boy Charley has become, and is becoming. Robyn texted me earlier saying “it’s time for another Charley update!” She was right. Charley is a smile and joy. We love every minute of growing with him.

Learning guitar

Daddy is weird

Our friend is on that poster!!! Go Hyundai

Peace!

Pushing the stroller at Disney

Fun at Disney

Mickey and Minnie!

9 things I want my sons to know

We adopted Charles in January, and are watching Charley grow up faster and faster (what’s the rush?!?!) I miss Ezra and Price, and wonder what they’d be doing now. Being a father has made me want to clarify the lessons I’ve learned. If I could give my sons some things to think on, it’d be along these lines. In no particular order.

1) Create. Consumption is easier and easier as technology evolves and the world becomes smaller. It is easy to fill your day with others’ creations, and I do think that’s important. Even more important is to learn to create something ourselves. Whether this is some sort of art (painting, writing, music, architecture, culinary), building an intentional family or living environment, a business… learn a craft. Set aside a time each week, or even daily, where you work on creating something.
2) You will never answer all of your questions, and that doesn’t mean you shouldn’t keep asking. “The pursuit of happiness” was mentioned in the US Declaration of Independence rather than the word “happiness” by itself, even though the other two “inalienable rights” were present tense – life, and liberty. It is simple to live accepting anything; it is rewarding and difficult to wonder. Question what you are told – I mean this in a curious, mindful way, not confrontational. Question for your own understanding. No one owes you explanations. Let your curiosity lead you to furthering yourself. What your mind worries on matters.
3) You will always have lonely times, but you are loved. We are mysterious; we are obvious. No matter how loved you are, in the truest sense, you will have days and moments no one can know with you. You will feel there are thoughts heavy and explosive inside you which burn to be expressed but you cannot find words for, or someone to express them to. This is normal. Address these things, through your creating, and let solace be ok sometimes. Remember your loved ones, though, and let them be a part of those parts of you. Working out how to express feelings which are difficult or confusing for me has led to my most intimate friendships.
4) Someone always has it better than you, and someone always has it worse. After losing Ezra and Price, we heard often “I hugged my kids a little tighter tonight.” Unsaid, but ringing in our ears every time, was “since I still have them.” Realize someone always has it worse than you – but please don’t let your lesson from this be to have more gratefulness for what you have. Don’t base your gratefulness off of others’ situations. Let the knowledge life is hard spur you to tear down your pride, and help those around you. Your troubles become much more bearable when you’re helping someone else through theirs.
On the other side of the same coin, someone will always have it better than you. Be proud for them, and strive always to better your self, never to become someone else.
5) Much of the beauty comes from the pain. It is cliché to say I wish I could take away all the pain you’ve felt, and will feel. Rather, I wish you could fully comprehend beauty without pain, although I don’t think we can. You will know loss, and you will know struggle – although I hope not too often. When you experience pain, don’t push it away – embrace it. Surround yourself with the people who care, whether that’s one person or one thousand. There is a song I love, called Why It Matters, which at one point says:
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

The beauty I mean, in life, is the recognition of those things which matter. The things which tug at our soul, connect us to others, and form who we are and who we are to one another. Look for those things.
6) People have great value. In the Bible, we are taught to love our neighbors as ourselves. Across most spiritual teachings is the idea of recognizing the value of life. We are not islands, but instead we are the sea. Know your friends and family, those people who have dedicated themselves to your betterment, and do the same for them. Hold your relationships with other in high regard, and never take them for granted. You will have some people only for moments, and others for a lifetime. Look for the value in each.
You yourself have great value as well. God calls us sons and daughters, and goes as far as saying your body is a temple. Pay attention to the things you let in your mind, your body, and your relationships. Be intentional about taking care of yourself and others.
7) There is so much to learn and see. Really, I could sum this up in one word: explore. So much more than traipsing through a jungle (although hey, that’s incredible too!), this is an approach to life. Learning how an atom moves, or how clouds can carry heavy loads while floating nimbly through the air, is as much exploration as lacing up your boots and climbing a mountain. I advise you do both. In the same way, explore your mind. Know yourself, and pay attention. Explore the mysteries of spirituality. I personally believe the Bible, but have spent much time exploring what other teachings say. Know why you believe anything – explore answers like a diver probes a shipwreck.
There is so much diversity in the world. In who we are, in how we live, in what we create and in the land itself. Don’t be afraid of what you don’t know. No matter how much you know, there is more to see. Relish this. Pay attention to where you are – be fully present. You can be inspired by the smallest moments.
8) There is always hope. No matter what you have seen, felt, been through… there is always hope. There are good people all over the world. You have, in yourself, the ability to love and be loved. The ability to change someone’s present, or future. To change your own. The past does not write your future.
9) Your mom and I love you. If you haven’t heard it enough, we love you. We always will. We may not always LIKE you, but our love is a constant for you. When it’s all too much, when you’re alone, when you’re confused, amazed, broken or victorious, we love you.

There is so much more to say, but if you can carry these things you do well. And of course, if you want to know more, talk to your Mom or I anytime.

“complete happiness”

Thank you to Elisabeth Parker from the Tampa Bay Times for her great writeup about our family in yesterday’s Sunday paper! You can read it online at TampaBay.com.

how can i help

Charlie moved in last Friday. We’ve taken to calling him Charles, and little Charley is Charley. I still call the wrong name half the time for both of them. I’m guessing that’ll never change.

It’s been both incredibly rewarding and tiring to welcome a new son to our family, as I suppose it always is. I told someone today, Charles is incredibly bright, funny, and driven – and daily reminds me how much we all need each other and how we’re always struggling for love and peace. He’s been in so many homes, families, and schools these past ten years I am sure it will take him a year or two to even believe we’re with him forever. His case workers already say he’s changed so much in these past months of visiting with us. My hope is as he feels the safety and love in our home, he can move from “living to survive” toward this journey we all seem to be on of learning ourselves and how we should interact with the world and people around us.

The other day I was frustrated. We’d been running like crazy people trying to get Charles in school, and all the details of welcoming a young man into our family, on top of what felt like a million things needing to be done, breaking, etc. One of those days – stretched out to weeks. We were kind of snappy toward each other; everyone was overwhelmed and tired. I was driving to the next place after another busy day of not being able to see my wife and kids, and frustrated.

I know it’s cliché, but I had this moment where I just looked at everything through the eyes of my family members instead of my own. Robyn was stressed wondering if we were doing the right thing asking Charles to enter a school with strict academic and life standards after so long of people expecting less of him (were we putting too much pressure on him? we know how much potential he has), wondering if she was showing him enough how much we care, wondering so many things a mother does about her children. These are deep thoughts – we are in charge of a life now, and what we do has deep effects on the man he will be one day soon. Charles was, I am sure, nervous. He is coming into a completely new home, way of life, and structure – was he behaving right? What was expected of him? Was this another home he’d be leaving soon (Charles – when you read this, no, it isn’t, you’re forever in our family to stay!)? Little Charley, of course, was just happy as could be. We could learn a thing or two from 3 year olds.

One thought came to me, and completely washed away my anxiety and stress.

How can I help?

When I got home that night, Charles was already asleep. I went into his room and said “you know we’ve got your back and are here for the long haul, right?” although he was asleep. I told him again the next day. I went into our room and gave Robyn a hug. I’d left the house in a hurry and a huff, and I’m sure she expected a continuation of that conversation. Instead, I said “I know this has been incredibly hard. I am scared sometimes too, and hope we are doing the right things. I hope our love for our sons will be strong enough to come through the decisions we make to build them into the men we want them to be. I love you.”

It was a powerful moment, and it’s something I’ve tried to do since then. Our entire life lately has been about helping people, both through Because of Ezra and through bringing Charles into our family. And I’ll tell you – the more time I spend figuring out how I can serve someone else, the less my own frustrations bother me. In other words – I find peace through serving others.

I usually like to wrap a better bow on these posts, but in this instance I just wanted to share that moment. It’s a continual thing.

charley, charlie

Back in July I mentioned we’re adopting from foster care. This entire time we’ve had a specific kid in mind who really stole our heart, and we’re proud to say we’re now officially moving forward with adopting him!

His name is Charlie. Kinda like how some of you spell our other son’s name – Charley.

He’s 14.

And he’s amazing!

Our good friend AJ Hurley is a master of all things film, and interviewed Charlie a while ago in a piece he put together for the Heart Gallery, a great organization in Tampa (well, nationwide) who photographs and videos children in foster care and lets the community know there are kids in our own neighborhoods needing families, love, and a home. Jesse Miller, who is pretty much a sister to us, runs the Heart Gallery here in Tampa and was the driving force behind making these videos happen. Another good friend of ours, Dan Weisberg, is the voice you hear. Ever since Robyn saw Charlie’s video, she knew we would be his parents.

You’ll have a chance to get to know Charlie more as we spend more time with him. We are excited and blessed to be able to take this step forward in our life and in his. We know it will be work – family always is! Already we know Charlie is much like us – a funny, smart, amazing person who has experienced loss and tougher life events than many. We feel a kinship to him, and are looking forward to continuing that relationship.

We’ve started visits with Charlie, and the timeline until he moves in with us is not definite yet. We are really enjoying this time of getting to know him. Feel free to pray for us and him as our family continues to grow!

stepping

Guess who’s stepping around on their own now?!?!?! (check out the video!)

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.