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…

a year without Ezra

(I meant to write this on the 1 year anniversary of Ezra’s death – November 8 – but couldn’t quite do it. I’ve taken the small liberty of pretending I still did write it that day. 🙂 )

One year ago today we held our son in our arms as he died.

It was the second time we’d done so that year.

It feels like it just happened, but it also just as often feels like decades ago. We visited Ezra’s grave today, with a few close friends. I was surprised I didn’t feel more emotional while sitting there… the sun was warm, and whoever is buried next to Ezra (Trudy McAdoo – hey hey, McAdoos), was kind enough to make her headstone a bench, so I sat there soaking in the sun thinking about the day we buried Ezra. While I was thinking of that, three deer were grazing a bit away from us at the edge of the cemetery and the forest. There was a slight breeze, although it felt a bit too hot.

Mostly I just felt peaceful.

We don’t feel peace every day. Robyn spent most of her (sure, young) life wondering what she wanted to do. She often tells me when Ezra was born she felt so complete – she simply… knew him, and was the happiest I’d ever seen her – rolling around on the floor with him singing, playing, and being an incredible mother. The video at the top of this post was every day with Robyn and Ezra, usually even when he was sick (although he was sometimes less energetic those days). The day we lost him she was broken in a way I hadn’t anticipated (we were both, and still are, broken in many, many ways). She had lost that deep, self-validating, purpose-infusing connection she had with Ezra. Something nothing else in life had quite given her. The bond a mother who truly adores her son feels.

Robyn is an incredible mother.

I swear she and Ezra could talk to each other telepathically, ha. Ezra knew I was fun, but he knew mom would bring comfort. He could be covered in tears, and 3 seconds in her arms would calm him down. She fought for him like a lioness, and she loved him with depth and honesty. I could hear their laughter from any place in the house when she tickled him and they screamed with happiness. Robyn had notebooks full of research material, and bunches of tabs open in her web browser at any time reading up and asking questions about neuroblastoma and how we could fight more.

Robyn is an incredible mother.

Ezra would sleep on my chest a lot in the hospitals. Beds are in scarce supply, and couches and chairs are appreciated but not exactly comfort-filled. Robyn has dozens of pictures on her iPhone of Ezra and I fast asleep in some hospital chair or sofa. I always thought it was funny she took those, but they’re some of my favorite pictures of he and I now. I miss my son.

An anniversary of a death is a weird thing. There are no “traditional” things you do. We wondered if we should feel sad, or think through Ezra’s life more… really, it didn’t feel different than any other day without Ezra.

Not a day goes by – not one hour – that I don’t picture Ezra. To you perhaps he was a story; maybe you met him. Maybe you spent quite a bit of time with him. I hope his small life continues to make people change for the better. I don’t care how, really – I don’t care if you smile more; if you decide to fight against things like this that take our children; if you let your love be freer and more vocal; if you look for joy in every God-granted moment because you know so many miss it. Every story affects everyone different. But I hope Ezra’s affects you. Somehow. For good.

I’m happy often. I really am. Sometimes I lose all my energy and get overwhelmed by the weight of the loss. There’s no “fixing” grief; it becomes a part of who you are – you take it, you learn from it, you adapt to having it as an occasional companion. Loss doesn’t define me; grief isn’t who we are. I do not think it’s anything that ever completely leaves though – and I wouldn’t want it to. How much more we understand the looks we see in broken people’s eyes now. How real the truth we have to help.

Charley is coming along slowly but surely – he makes his own pace in life, and he’s a stubborn little man who is completely ok with this. I’ll write an update on him next week, and get you all some updated photos. He’s learning to crawl, and is stronger every day.

It’s November now, and the cold is coming in. Well, the Florida cold. We wrap up in an extra blanket at night, and put our jackets on when we leave the house. The crisp air is invigorating.

At Ezra’s service, someone asked people to write on cards “Because of Ezra,” and a brief sentence of how he’d affected them. Robyn and I read through the hundreds of cards today. Thank you, everyone.

Because of Ezra… we are better.