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The point of this post is to ask you to go here https://echoofhope.org/100klives/ and help out. If you do this but don’t read the rest of the post I’ll be sad, but I’ll get over it.

When millions of people saw Ari’s video as it went viral the day of his transplant we were immediately flooded with media inquiries. For two reasons we still have not spoken to any press yet. First, we were (and are) focused on Ari. Second, we are sensitive to the fact that a family had lost a child, and yet, during a time of immense grief, chose to give the gift of life.

We didn’t feel comfortable speaking with anyone.

In the few minutes we talked to each other about it, we asked ourselves, “If we have 15 minutes of fame, what do we want to do with it?” We didn’t have an answer.

We do now.

We are going to try to save 100,000 lives.

And when I say we, I mean you! We need help from all of you. Keep reading to find out how.

Give to the Schultz family here online to help with medical expenses and to rebuild their home they lost to toxic mold. Unlike other crowdfunding sites, Youcaring does not collect a fee. Prefer to mail a donation? Make out to Erica and Michael Schultz. Mail to: Linda Stritch, P.O. Box 1567, Wells, ME 04090.

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We post this picture of Ari to raise awareness for the need for people to register as organ donors during #DonateLifeMonth. Approximately 300 pediatric heart transplants are performed each year. Too many children don’t survive the wait. Register here: #DonateLife.

Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”

Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.

Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.

Fudōshin!

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Loss for Words

Ari and I head to a Celtics game just before Ari went inpatient

Nobody should ever have to hold their 5-year-old’s hand through a cardiac arrest. 20 minutes felt like a second, and like forever. I am so grateful, however, that I could be there with him the whole time talking to him. I’m glad I could find the words for him, and have him to focus on me and not what was happening to him.

Right now, I got nothin’ much. At least nothing eloquent or insightful. Loss for words. This just all really sucks.

Ari went into cardiac arrest due to severe rejection at 8:20 p.m. on Wednesday, March 22. His heart rate first rose and then started to drop slowly before his heart gave out. When it reached about 70 beats per minute, they started CPR and the process of racing to the cardiac intensive care unit for emergency surgery to place him on ECMO, or heart/lung life support. The machines are now doing all the work of his heart. Ari’s is resting.

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Since the beginning, we’ve told Ari we don’t know how long we’ll be at Boston Children’s Hospital. Late last week he was looking pretty good. I was feeling pretty bold. Started talking about home.

I said to him, “I think it’ll be nice out when we go home. What do you want to do?” Answer: baseball…and golf! He’s the only 4-year-old that I know that has played 18 holes at a championship course while in congestive heart failure.

Ari golfing at Ari’s Tournament to benefit the Ethan M. Lindberg Foundation. Backpack delivers IV medication.

I can’t stop thinking about how much I want him to come home. How much I want to play golf with him.

Unfortunately, we have been hit with very bad news on two fronts:

  • Ari is being treated for acute rejection
  • We learned on Friday we have to tear our house down and build a new one from scratch

Ari is struggling mightily. He went downhill and needed operations and procedures every day this week. On the day of procedures kids can’t eat. Ari had his food and water taken away every day.

The pokes and sticks were relentless. The rejection treatment, which takes a while, is horribly uncomfortable.

Home just got a little further away. For all of us.

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A New Hope

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.

In that post I said the following:

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For the Duration

Ari and Lexi

(Ari and Lexi)

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.

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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.

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