Ari’s new heart began beating in his chest spontaneously at 11:32 p.m. on Friday, March 3.
When we were sitting around the room Friday afternoon waiting on the cardiac floor at Boston Children’s Hospital, I asked Ari what song he wanted to hear. Immediate response: Scarlet Begonias into Fire on the Mountain
Until I typed this, I forgot this is the second appearance of Scarlet Begonias on Ari’s blog. I mentioned it in Circumcise Your Heart when Ari was 9 months old.
On September 9, 1965 Commander James Bond Stockdale took off from the air carrier USS Oriskany in his A-4 Skyhawk jet and was shot down over North Vietnam. He remained a Viet Cong prisoner of war at the Hanoi Hilton until February 12, 1973.
During his seven and a half year imprisonment, he was regularly tortured and denied medical care. Four years into his captivity, he was shackled in a shower stall where he was subjected to incessant torture. When he was told that he and his fellow POWs were to be paraded in public for North Vietnamese propaganda, he slit his head with a razor and beat his face to a bloody pulp with stool so they could not use him.
From the time Ari realized there was a world around him he’s been obsessed with golf. Last year on a Saturday in April I took Ari to Stow Acres to putt for a bit. We did that for an hour, putting and chipping away. Then we split a large bucket of balls. Then lunch in the clubhouse. Ari’s friend Norm was there and gave us a cart to play a few holes.
This became our summer. All week we’d hear a steady chorus of “Is it Saturday yet?” Saturdays were for Stow Acres and golf.
A few months ago just before Ari turned 4 we went to Florida. As you might imagine, he was pretty excited for some golf. We went to The Dunes in Sanibel. Ari had a blast putting and chipping. He actually drew a gallery. I mean, he was still 3 and he’s not on the growth chart. Right on cue, hit 50 foot chip from 15 feet off the green that rolled right into the hole. Big enthusiastic golf clap from the gallery.
Hi folks. For those of you who haven’t heard already, Ari’s wish was approved by the Make a Wish Foundation. While saying ‘thank you’ doesn’t quite express the sentiment, here’s a video from Ari and us to share with you what he wished for, and to express our gratitude to the Make a Wish folks.
Inside is a special hat tip to Mike Gorman, the Celtics play-by-play announcer who has called the games for over 30 years with partner Tommy Heinson. Ari had the pleasure of meeting Mike last night, and Mike graciously signed Ari’s ball. Ari says, “Mike Gorman says ‘Got it!’ when the Celtics hit big shots!”
Also, for your viewing pleasure, here’s Ari at the house knocking down some shots just before he turned 3. Of course he hit 5 in a row before I pulled the camera out to see how long it would go. A few more calls of “Got it!” in here, too.
P.S. Ari’s doing well, enjoying pre-school, and still learning how to eat. Maybe someday he’ll get off the feeding tube, but we have to say, it’s helpful given he still has meds around the clock.
Cardiac status is still a question mark. Last echo in December didn’t show any improvement in his pulmonary hypertension. We have an echo and appointment with the transplant team this week. He’s not listed for a transplant right now, but they watch him closely.
I know. It’s been a long time, mostly because we’ve been waiting to see how the dust settled on Ari’s cardiac condition since his last surgery in May and cath in August.
As per usual, I’m going to make you slog through some reading before we get to the cardiac stuff.
As a kid, Ari is a blast. If you asked me last year if he could be any more addicted to sports, I’d say no. Yet, he is. We get requests to play or watch at least 5 of these a day: basketball, hockey, soccer, golf, baseball, football, bowling, and women’s volleyball. No joke, he asks to watch golf and bowling. When they’re on, he watches. Intently.
And when women’s volleyball is on, Ari says, “They’re pretty.”
Ari’s new thing is golf. He wakes up in the morning and calls for us. When we go in there’s no hello. No, “Did you sleep well daddy?”
It’s “Watch golf. Bubba Watson!”
He’s a player, too. If he’s not shooting hoops, odds are he has a club in his hand, swinging away in the living room. We’re working on putting because, you know, we like our floors without the divots, but it’s a work in process.
On Saturday morning I was excited to ask Ari when he work up, “Ari, do you want to go watch real golf?” Of course he did, so off to Stow Acres Country Club we went. First up, driving range. We watched some guys hit balls and he was thrilled.
It wasn’t so busy, so we got a bucket, went off to the side, and teed up. He missed a few, but not necessary more than I did. When he connected, he actually got some yardage! Not even 2 and a half yet, and hittin’ ’em good.
When we last left our hero, he was headed off to headline the Heart Ball. There we talked to Ari’s cardiologist and surgeon about whether we should have surgery on May 12 to replace his pulmonary valve.
Later that week we learned that while he looked good on the outside, an MRI showed his right ventricle was holding more than twice the blood it should, contributing to very high pressure. It was time to act before damage became permanent. We’ve been waiting a year and half to find out when we would do this. Now the guessing game was over.
Our last post-surgical hospital stay was 4 months. Doctors said if this surgery was smooth sailing—and there was no reason it shouldn’t be—he could be home as fast as 3-4 days. You’d figure they knew Ari by now…
Last night was the American Heart Associations annual gala Heart Ball. Ari was the featured heart warrior of the night. Here is a copy of my speech about Ari, along with the video Erica and I made to share a bit of Ari with everyone. It was a true honor to be a part of such a great event, and to get the opportunity to recognize Dr. Wayne Tworetzky and Dr. Ram Emani.
I posted the video up top here, but if you can stand waiting, watch it below where it appeared in the speech.
Also, it’s not in the speech as they noted it another time, but my next book, Insight Selling, just came out this week. For all books sold through May 10, we are donating all of our royalties to the American Heart Association’s fund for congenital heart defect research.
And here we were before we headed out to the event:
When I first started writing Ari’s blog, the primary reason was exhaustion. I was on the phone until 1 a.m. giving updates several days in a row. It was too much. So I started to write.
People asked if it was therapeutic as well. Sorta maybe, but during a crisis it’s more war chronicling than journaling. “We’re in the foxhole. They’re shooting at us.” Soothing? No so much.
As I’ve noted in the past, the blog eventually gave Ari a voice. That’s when it became more for me than a convenient excuse way to avoid people give updates. And this was before Ari’s voice really came alive when he started posting his own updates.
Here on Echo of Hope, Ari has:
– Been a spy on a secret mission
– Won the World Wrestling Federation heavyweight championship
– Been interviewed by Time Magazine
– Starred as a special guest on Who’s Line is it Anyway?
– Delivered the commencement address at Harvard Medical School
– Reviewed Erica and me as parents
And more.
As of this moment, however, Ari will write no more posts.
***Note: It’s Congenital Heart Defect Awareness Week. Please like and share with reckless abandon! It’s more important than ever right now. Keep reading to find out why.***
A little while back I saw an old friend post on Facebook, “I’ve changed my last diaper!” The youngest of his three girls had finally gotten the hang of the potty.
For him, gone were the thousand-wipe-a-day, 5 outfit switching, blow-out riddled trips to the mall. Gone were the days of spoon feeding stage 1 purees to the bib, the floor, his sweaters…pretty much to everything but the kid’s elusive pie hole. And, gone were the days of complete reliance on parents for dressing, eating, getting up and down the stairs, and the seemingly endless changing of the attached-with-stickies personalized disposable bum-hugging potties.
Echo of Hope 