Echo of Hope

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.

Didn’t get that one on video, but now that I have it here on the blog, I’ll always remember it, just like the Arnold-Palmer-swing drive on the 2^nd hole at the Dunes in the video above.

Weekends filled with Lexi dressed up and dancing around in her fireman outfit, Ari’s golf addiction, and talking about possible names for baby boy #3 due August 13 (mic drop) is a lot better than weekends in the cardiac intensive care unit with no end in sight.

Just because Ari’s out at the moment, however, doesn’t mean that other children aren’t in, their families in the crisis of their lives. We were at Boston Children’s Hospital for 220 days inpatient during Ari’s early life.

Fortunately we live close to Boston. Yet 50% of families have to travel to Boston Children’s for cardiac care for their children. A stay in Boston often averages $425 per day when you add up travel, housing, food, and other daily needs.

If we were from out of town, this would have added up to $93,500 on top of medical expenses.

For those who have to travel to Boston, one parent often loses their job and their income while family incurs tens of thousands of dollars in debt for travel, housing, and living expenses. This does two things: some families can’t come and their child doesn’t get the care they need to survive. Other families come and are ruined financially.

We are hosting Ari’s Tournament to benefit the Ethan M. Lindberg Foundation to make sure families can get the pediatric cardiac care their children need, and don’t get ruined financially. We’ve rented one apartment in Boston, recently granted $25,000 to families, and are fundraising to build a Heart House in Boston.

We certainly hope that you can join us at the tournament, or support Ari and our effort, in one of the 5 ways noted below.

Before I’m done here on the post, though, it’s been a long time since I gave a medical update on Ari.

His valves are all currently ok, but his pulmonary hypertension is somewhere in the yellow zone. His doctors fear it’s closer to the red zone. He’s not listed for transplant right now, but he’s followed closely by the heart failure team. He had a cath last year to dilate his Melody valve for the 3^rd time. Next cath is scheduled in mid-July, just before baby boy arrives. Ari’s still tachypnic at baseline and doesn’t have much reserve. For example, he got a cough a few months ago, which required 3 days inpatient for respiratory support.

He’s learning how to eat, though mealtimes are still a lot of work. We haven’t used the tube in a while except for his night meds; still on meds around the clock. Weight gain has been a struggle. All in all, though, most days it’s more golf, basketball, and Star Wars than anything medical. His major behavioral issue is, no joke, aggressive hugging, much to the surprise of the strangers in the mall. We’re working on it though.

But I’ll ask him to save one for you when you come out to see him at Ari’s Tournament.

5 Ways to Participate

1. Register a Foursome – Registration includes golf and dinner for four.
2. Register as a Single Golfer – Registration and includes golf and dinner for one.
3. Join Us for Dinner Only – Join us for the dinner and awards banquet.
4. Fundraise as a Virtual Golfer – Can’t make the event? Become a virtual golfer. There is no registration fee and you can be apart of this exciting event by registering to help raise funds for Ethan M. Lindberg Foundation.
5. Become a Tournament Sponsor – Learn more about our sponsorship packages.

And if for some reason you can’t make it, you can help Ari hit his fundraising goal here.