I call this “concentration face.”

Five Fin Friday

I’m going to say five things about Fin today, because I normally post something about Fin on Friday and yesterday was a big day.

First, Fin had an eye doctor appointment. In the never-ending battle to figure out if all his system problems stem from one root genetic cause, the eyes always come up as an issue. Has he been tested? Can he see well at all? Does he know his colors? He’ll lie to you and tell you everything is purple, because that’s his favorite color, so it’s difficult to gauge. He went to the eye doctor and passed with flying colors. He has 20/20 vision and normal eyes.

When I got home, I was pretty bummed because I spelled “hors d’oeuvres” wrong on the company Christmas card, not one way, but two different wrong ways, so I was dragging ass a little bit. My wife asked me what was wrong and I told her. She said she was gonna make my day, so I immediately started taking my clothes off, but the kids were still awake, so that was out of the question. Then Fin stood up from where he sat all by himself and walked over to me like it was no big deal at all. This kid friggin’ walks. He has his balance. He can do it. He can walk.

After I praised him and his awesomeness, he went over to his toy garage and sat down and started playing with his cars. He got his suction ballard stuck under the top floor of the parking area and he cried. This is sort of like getting your tie stuck in a paper shedder. He tried to stand up and it popped his trach out. So we had to do an emergency trach change. No big deal.

We’re getting rid of the chair in the living room because Fin was sitting on it with no diaper and peed all over it. I never really liked that chair.

I expected last night to be difficult because of the trach change, which can be irritating on the throat, and Fin has had this lingering cough but last night he slept very well, so, naturally, I did, too. Fell asleep watching Mysteries At The Museum which is the show my daughters make fun of me for watching because it puts me to sleep but I love it. And tonight, we have a nurse, and it’s Beer Friday, so look out. I feel like staying awake.

Fin went to the dentist this week. It was his first trip. We were wary, for obvious reasons. Mainly because he hates anything being in his mouth, ever. We try to brush his teeth and he gags and then he needs to be suctioned and it’s a big scene. But this dentist was unbelievably soothing. He’s from Cameroon and he’s this gentle giant who has a special way with kids. Fin was mesmerized by him and let the dentist look in his mouth with his little mirror and everything. No cavities! Oh, and this is a barrette that Fin was shoving in his face and not some weird dental tool.

jeffslastramble asked: Ben. I got a question. You know how sometimes people say "I am so thankful (or lucky...or blessed) my kids are healthy" or some variant of that. I was thinking how because of the challenges Fin and your family have had, that that could be kind of hurtful. Not in an intentional way, but in kind of how people are often dim-witted monkeys who should probably have stayed in the trees for the sake of all involved. Is this as uncool as I think?

I’m so glad you asked that. I know how it must appear, and yes, I do wish Fin was “normal”. But I don’t think it’s a bad thing for everyone to hope for and wish for and be thankful for the health of our children. I hope for that for all my kids. I always say, hey, two out of three ain’t bad. Half-joking, of course. I feel very lucky that Fin has survived what he’s been through. It could be that he didn’t make it. There are those among us who have lost children, and I can’t imagine what those parents are going through. I mean, I get it to some degree, but he’s still here. So I do feel blessed, and I do hope that no one ever tempers themselves around me because of it.

There have been times it has stung in the past, but I’m getting better at dealing with it. There were three babies born in the same time period at work. I was incredibly jealous when the other employees got to bring in their little bundles of joy and mine was still in the hospital. But that’s selfish, and beside the point. Their lives had very different starting points. Fin is still on a ventilator. To expect him to be caught up to everyone else his age is not fair. Do I hope for it? Yes. I think someday he’ll be in pretty good shape.

I remember, starting out, and seeing all the problems he was having just to breathe, I thought, wow, this is rough. But he’ll be okay. Then another internal system was affected, and it was like, nope, it’s not okay. Then another system was affected. I was still pretty numb. You don’t have much to prepare you for the feeling. It hits you like a Mack truck. If you have nothing to compare it to, you’re blindsided. I remember actually thinking, hey, maybe we can get this kid a new body. I was that far gone in my thought patterns. No, we don’t get new bodies, not yet. Either the kid makes it, or he doesn’t. And I’m glad he did.

It’s not the best picture but I love it. He did this himself. He crawled over, set up the drums, stood up on his own, put on the headband, grabbed the sticks, and went for it. My little boy is getting so big.

Camping with Fin. He got really dirty and grubby and we tried to keep up with it, but after a while, we just let him play in the dirt by the campfire and occasionally he’d stand up and rub his filthy little hands on the side of Uncle and Auntie’s “bus”. It was a good time. Until my nephew punctured his pancreas, of course. But, we will go camping again. Yes, we will.

Today is Fin’s last day of being two. It’s exciting. It’s hard to believe. It’s bittersweet. He’s still so much like a baby, but he’s also a big boy. Right now, he has a double ear infection and a respiratory infection and he’s on two different kinds of medications and we had to put him back on oxygen on the Fourth of July. He’s already getting better and we’re weaning his oxygen because he’s a rock star. Here he is, coloring our front steps with sidewalk chalk because his sisters include him in everything they do.

Your Friday now has more Phineas in it.

Five For Friday

My nephew has called me Uncle Fungus since he learned how to talk. Now he’s a smart, wisecracking ten-year-old who loves music and technology and really gets irony. He’s a good kid. A little weird, but, hey.

I often feel that Fin Friday is exploitative to some degree, but let’s face it, exploitation is what we do here. And the response always overwhelms me, and I thank you for that.

This week, there has been a big to-do around town about a proposed LNG tank site that has taken up everybody’s time and energy. Supposedly, it’s going to be among the largest tanks in the country. Town officials floated weather balloons to show what the actual height of the tank would be and people have been splitting left and right on the decision, and frankly, I’m sick of hearing about it. Can’t we just talk about something else, like sports? How ‘bout them Heat?

The Beach Boys are playing the waterfront tonight. I can’t believe The Beach Boys are going to be in my state. I can’t believe I’m not going.

Don’t start a question with “Where do you get off?” I don’t like that phrasing, and you probably don’t want to know. I would make a really bad nudist.

Fin’s First Flowbee

My father has cut his own hair with a Flowbee since I was in high school. He insists that it’s the way to go. I can count on one finger the number of times I’ve let him near my head with that thing. However, Fin hates haircuts and all those tiny little trimmings get all over his trach ties and itch his little body, so my father thought it might work out well to use the vacuum cleaner haircutting system on my son’s head. He was right. Fin didn’t complain. There was no mess. We didn’t have to give him a bath when it was all said and done, and my father is pretty proud that he can use the Flowbee on at least one member of his entire family.

Fin was cracking me up in the park because he wouldn’t wear his hat and he kept making farting noises with his mouth.

Fin is riding in the car and looking at us as if to say, hey, whatchoo lookin’ at?

Fin was so excited because his vent fit in one saddlebag and his food bag fit in the other so he got to go for a ride on Papa’s motorcycle.

A smile for Friday.

Finny loves his Mama.