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His Own Voice

Ari Cath Lab

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.

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Ari 20 months

***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.

Seemingly endless, until, you know, it ended.

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Ari Bam Bam

Early last week, I was asked  introduce Dr. Jim Lock, Cardiologist in Chief at Boston Children’s Hospital, at a major event focused on raising money to support research and innovation for the hospital. I only had a brief window on Tuesday night to prepare remarks for Thursday’s event as I had to, you know, work like everyone else during the days. By the time we’re done with dinner for the kids, bathtime and bedtime, and prepping meds for the following day, it’s usually pretty late.

No motivator like pressure, right? Here are my remarks and the pics I used in the presentation.

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A Year at Home

Ari 17 months

Last week on the news I heard a fresh version of an old story. Man was working on daughter’s car. Car jacks fail. Man gets pinned under car.

Daughter sees dad pinned. Goes over to car, says a mental “Shazam!” and miraculously lifts car off dad. (In the future she never drops the subject as she angles for dad to pay her unfortunate gambling debts, but that’s not important right now.)

When I’m in the hospital or somethin’s a-brewin’, Shazam!, I can get a deusy of a blog post out as easy as toastin’ a Pop Tart. When it’s just another day on the lake, what can I say, it’s more fun sitting on the dock watching the boats go by than writing.

Seriously, three middle-aged chicks just floated by on their party boat playing power ballads (…and I don’t wanna miss a thaang…). One was talking about how her homemade Buffalo wings kicked ass. The other was smoking a stogie. How can you beat that!

Still, I’ve been slackin’ so I thought I’d give you a straight up update. Or is that a straightupdate? Whatever.

Here’s what’s been going on life and health-wise, and a little by the numbers update just because.

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Days like today give us opportunities to make choices. What to think. How to react. Since I’m pretty plugged in to social media compared to most 14 month olds, I’m seeing plenty of both.

Beneath it all, there’s this other choice. A choice that – whether we’re thinking about it or not – accompanies the others.

That choice: What to hope for.

It’s easy to hope for comfort and healing for the marathon victims and their families, for the safety and efficacy of our law enforcement officers, and for justice for the bad guys.

Here’s what I hope for that’s not so easy:

1 – Rage short and focused, not long and broad. Hate and anger are real. I’m not perfect, I feel them. But they are terrible things. Difficult to contain. It’s all too easy to lump whole groups of people in with the bad guys.

Religions and countries are not the bad guys. The bad guys are. They tried to make a difference with hate, and they got me with it. At least for today.

I feel what I feel, but if I hold on to the hate or let it spread, they win. I hope to let hate go.

2 – Act, don’t stew. Frustration and anger always lead to armchair quarterbacking, but rarely lead to action. I don’t mean I need to take action in this particular situation as I think the Feds wouldn’t appreciate it much, but I do have a choice today. I can make a difference.

I can do something today that makes people’s lives better. People are hurting on the news. They deserve help, but today I can’t help them.

People are hurting quietly everywhere I look. Their stories are not on TV. I can make a difference for them. I hope I do.

3 – Remember. I will remember today. I’ll remember what happens. I’ll remember the choices people make: What they choose to say, what they choose to do, and what they choose not to. I will remember what I do as well.

But will I remember to do something tomorrow that makes the world a better place? Will I remember next week? Next month?

The spirit of making a difference strikes many of us when the day reminds us that we should. Many days don’t. I hope I remember this, remember to make a difference on days when nothing reminds me to do so.

I hope I remember. If I don’t, I hope you remind me.

arihome95

First off, enjoying my vaca here in Flaahrida. Evidently vacationing at the G-parents’ house is a bonus for the parents since you can’t give me to just any babysitter. Even though I’m a treat and a half, you gotta be trained up right to watch me.

Been enjoying the pool and the beach. Had a nice visit from fetal cardiac intervention brother Eli who lives here in Dixie. And went to my first Sox game. Only spent 3 innings in First Aid cooling off. It gets hot down here!

It was nice, though, heading in to First Aid and just telling them that I’m not just any schvitzy kid. 30 seconds of the story and they rolled out the couch for dad and me to stay just as long as we pleased. A little A/C and I was ready to go back out and see the Sox blow the game at the end. Do they do that?

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Ari’s Mail Bag

Ari this morning

Oprah: Ari, what’s shakin’? Where you been? What you doin’?

A: Since the mitral valve dilation, been pretty good. Essentially quiet life. Been gaining weight slowly but steadily except for the 3 week RSV diet. RSV is bad bad bad for kids like me who already take 6 medicines to help my heart and keep my lungs clear. Because, when you need meds like that, what you really want is a lung infection, right? At least now I know what it feels like to be an 80 year old chain smoker. Something to look forward to.

Since then, pretty quiet. Still not eating much by mouth, but when I’m not sick, been keeping food down pretty well. To give you a sense of what the mitral valve dilation did for me, before I went in I was throwing up 3 or 4 times a day. Ate no solid foods. Nothing by mouth. No toleration of high calorie formula. We overnighted at the Barf-o-Rama hotel.

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