Last week Ari took Erica and me on a little walk around Ogunquit. I notice a woman staring at me from about 30 feet away as she walks towards us. I’m used to this kind of behavior, of course. I start waiting for the winky winky, but then she’s stares at Erica, too. Strange.
When she walks by, she looks in the stroller, and turns to her two friends and says, “That’s baby Ari.”
That was that. We all kept walking.
Probably most parents whose babies aren’t named Mary Kate and Ashley would think it was creepy. I thought it was pretty cool.
He’s a celebrity for sure, that Ari. Granted, it would be nice if he was famous for inventing Vitameatavegamin, receiving a Tony for his one man mime Spamalot rendition, or perhaps winning the Megabucks than what he’s actually famous for, but I guess it’s better than ear nibblin’ like Mike Tyson or lyin’ in bed like Brian Wilson did.
Then it hit me. Ari’s fans don’t know what’s going on! I’ve been shirking my responsibility to keep the world informed. Mil disculpas a todo.
Just because I’m back working full time and have a kid at home that does more drugs than spawn of Robert Downey Jr. and Lindsay Lohan is no excuse.
Here’s what’s up. And strap yourself in and grab some General Foods International Coffee. It’s a long one.
Been back at home here for a little while now. A few weeks ago Ari had a feeding tube surgically implanted in his belly. Thus we don’t need the up his nose with a rubber hose anymore. His purty face is on display in its full glory.
Working on weaning off of methadone, lorazepam and clonidine, and will be for a while. Just starting to work our way down on a few of the other meds, too. Still single handedly inflating the stock prices of the global pharmaceutical industry, but slowly simplifying the daily cocktail.
A few weeks ago Ari charmed all at his great grammy’s 87th birthday party. Last weekend he enjoyed several hours with his grandparents while mommy and daddy went out for their 4th anniversary. (Good thing we could only get an early dinner reservation. We were practically asleep in our soup bowls by 8.)
For the most part, he’s been hanging around the house taking in life, and getting stuffed by us with so much rocket fuel milk that he may just be able to unseat Joey Chestnut for the gyoza title.
We don’t yet have enough data on whether or not he’ll be able to sustain it, but his weight gain in the last two weeks has been steady if unspectacular. Big or small, up is up. We’re on the right track.
Just a few months ago it seemed Ari’s life hung in the balance on a daily basis. Long term heart health is still anybody’s guess, but now the days go like this:
- Bed at 7:30pm. Wake up at 1, 2:30, 3:30, 4, 4:30, and 5. Up from 5 to 7 walking in circles around the house.
- Meds meds meds.
- Stuff the kid. Stuff the kid. Stuff the kid.
- Nap nap nap.
- Happy fun playtime. Raspberries. Walks. Driving around. Hoping the cops don’t ask Ari for his license.
- Early intervention. Physical therapy. Nutritionist. Doctor doctor doctor.
It’s constant craziness, but it’s good craziness. He’s a happy kid most of the time. Some of the times, well, he’s a real wanker, but we love him anyway.
Speaking of wankers, right in the middle of the double open heart surgery battle, I got a funny little request from the Children’s marketing department. They were making a “heart parents speak” type video
When I say heart parents, I mean, of course, heart moms. Someone in the diversity department must have realized the video shoot was shaping up to be all lass and no lads, and said something like, “Hey, get a guy if you can. Don’t care how low in the talent pool you have to go, just find one.”
And there I was. Token wanker. (Stay tuned. Wanker theme to continue.)
Along with doing my part in the video, they ended up asking me a series of questions.
Q. What in Ari’s life are you most looking forward to being there for?
A. Getting his AARP Card.
Q. Aside from the obvious stuff, what’s something that people don’t know about life at Children’s Hospital?
A. It’s very difficult to maintain a low carb diet walking by the 24 hour Au Bon Pain all day every day, but somehow I managed it. Meanwhile, cheat days are glorious.
Q. What have you learned from all this?
Heavens to Murgatroyd! No fair. There’s no way to answer that question with a joke without seeming either evasive or out of touch with the gravity of the situation.
And how could I possibly answer without sounding sanctimonious?
Here’s what I said, plus or minus:
Good friends of ours just lost their seven year old son to similar heart disease after a long and painful struggle. After a while, when they were ready, they posted a message online to friends and family. In that message, they said that their son’s life made their lives big and wide.
I might not have understood that before, but I understand it now.
Not sure why that came to mind, but that’s what I said. From then on, that question and my answer never left my mind.
What have I learned from this? How has Ari made my life big and wide?
It took me a while to figure it out, but I think I’m on to something.
Ari went into heart surgery for the first time at 14 hours of life. Because of that, a little thing that we were planning to get done didn’t get done. Didn’t because it couldn’t.
Ari couldn’t get circumcised.
It’s not that the mohel retired because he couldn’t cut it anymore, it was a bad idea to stress Ari out before or after a heart procedure. After the first few days, circumcision takes a urologist and anesthesia. Anesthesia for Ari is on a “must do for heath” basis only, so no circumcision.
(Possible title for Ari’s autobiography: Wanker Uncut. Discuss.)
I asked the Rabbi what her thoughts were on this. She said the most commonly cited circumcision reference in the Torah isn’t the only one.
In Parshat Ekev (Deuteronomy), Moses tells the Israelites, “Circumcise your hearts, and be stiff necked no longer.”
So, while Ari hasn’t been circumcised in the common tradition, through heart surgery he’s been circumcised quite literally according to at least one guideline set forth in the Torah. As far as she was concerned, he’s got that one checked off on the to-do list.
That’s our Ari, taking the road less traveled. Circumcised for sure, just not in the way that will identify him as a He-bro at the gym.
I asked the Rabbi about the context of the passage. She said it’s one of those not-really-clear cut (get it, cut) Old Testament rambly-type passages. People have interpreted it in lots of different ways.
I thought about it for weeks.
Here’s my take.
When things are largely normal, people (read: me) fall into patterns in their lives.
Wake up. Head off to work. Come home. Do the usual things. Figure dinner out. Have a glass of wine. Watch TV. Go to sleep. Lather, rinse, repeat.
Prep for weekend. Make a list. See some people. Have some fun. Sneak in some work. Do things on the list. Not get to the whole list. Wake up on Monday. Go to work.
Plan a vacation. Make a list. Do things on the list. Come home. Go back to work.
Years go by. Except for getting a little slower and a little creakier, you don’t change much. In a strange way, it all seems pre-written, like these are the things that are gonna happen because they’re gonna happen, all because our mental models – our visions of what our lives should be – don’t change much.
All the while – doing exactly what you think you should do in your life – something feels like it’s missing. Maybe not for you, but for me, it’s there. (Or not there. You know what I mean.) Sometimes it’s top of mind and sometimes it’s buried way back, but it’s there.
This isn’t to say I don’t live life. I do. I love Erica. Love my family. Feel satisfied at work. Take time to smell the roses and all that. But there’s still that noodling in my brain that there’s something more to it all.
Then Ari comes along and all bets are off. Everything you thought your life would be is gone in an instant. Everything you thought you were going to do changes. Your plan is completely derailed.
You strap on your armor, and go from one call to Action Stations to the next.
Then, mid battle, when the days are dark, breaks don’t happen, and sleep is a memory, someone asks, “What’s it like going through this?” and you surprise even yourself with your answer.
Someone did, indeed, ask me. I didn’t say, “It’s the most difficult thing I’ve ever done.” (Meanwhile, it is.) Or “I wouldn’t wish this one anyone.” (I wouldn’t.) Or “I just can’t wait to get him home.” (I couldn’t.)
I said, “Having Ari. Fighting for Ari. Traveling this road with Erica. It’s been the most meaningful thing I’ve ever done in my life.”
And the hole was gone.
There I was, driving stiff necked through life, too often feeling like a spectator – not a meaningful participant – in my days.
Then Ari circumcised his heart. Along with his went mine.
Every day I see things I never saw before. Every day I feel new feelings. I could go on for post after post about my love for my son and the rich sense of pride and hope he gives me. Seeing my wife as a mother, as kind and caring and strong as ever, but somehow more beautiful every day. Hoping I can be as good a father to my son as my father was (and is) to me. How I feel a new sense of empathy for the heavy burden so many people bear, so often silently.
Damn, I just reread that last sentence (fragment) again and now I have no choice: I have to vote Democrat. I guess a bleeding heart will do that to you.
I’ll leave it all at that, but say just one more thing for the record.
I get it. Ari’s life has made my life big and wide.
And I am forever grateful.
P.S. Speaking of grateful, one of my favorite lines in one of my favorite Dead songs goes, “Once in a while you get shown the light, in the strangest of places if you look at it right.” I tried and tried to fit it in this post, but couldn’t figure it out. Perhaps someday, somehow, I’ll slip it in.