From Tante's Perspective

From Phyllis: We've always believed that the more people who are around to love our kids, the better. "Tante" (Auntie) Anne wrote these reflections after our trip to Israel together. Some of the funnier grown-up moments came when we tried to explain to El Al and Israeli security how we were all connected to each other….

by Anne Persin

"Do you know what's happening?" Sam asked me the day he found out.
"You are very sick." I answered.
"I'm not sick. I'm going to die."

How do we support an 8 year old who is dying without a. pretending everything is fine - just stay on the sunny side! or b. giving in to the depression that is trying desperately to pull us all in? We have all been walking this line - at different times favoring one side or the other - hoping that experiences, the making of memories, could help us all through. Sometimes it works better than other times.

12 of us just spent a week together in Israel. Sammy had said over and over again how much he wanted to go.
He was told: the flight is going to be crazy long. He still wanted to go.
He was told: it's going to be very tiring. He still wanted to go.
He was told: the food is going to be really different. He still wanted to go.
So we went. Then, halfway through flying there, Sammy got a rash. A really bad rash all over his body. He was overheated. He was uncomfortable. He was miserable. It took sooooo long to get there. Everything was sooooo exhausting. And the food - blech. This dream trip to offer Sammy the chance to experience one of the few things that he really wanted to do before he dies was looking like a horrible failure.

[Before I continue, I must say, thank you, thank you, thank you to our guide, Uri Feinberg. His warmth and patience, flexibility and care made our trip 1000 times more wonderful then it ever would have been without him.]

Wednesday was a little bit better. We went to the Biblical Zoo in Jerusalem and fed the elephants and the giraffes and the zebras - it was awesome and Sammy got into it but it was just for a moment, it seemed. In the afternoon he was back to being tired, angry, and miserable.Thursday, on our way out of Jerusalem, we went to the Jerusalem Bird Observatory; and little bits of the silly Sammy that we all know and love started to peek through. He walked a little bit more instead of relying on his wheelchair. He talked a little bit more instead of disconnecting to the people around him. He let birds fly, looked for frogs, pointed out turtles.

But it was Friday - our last day in Israel - when he finally started to open up to being there, in Israel, with us. He ate. He went to the beach. He talked to us - not about how miserable he felt but about memories and fishing bait and airplanes. He gave opinions about nicknames and pipe cleaner creations and sand. It wasn't a perfect day, by far, but it was a day where he didn't spend the majority of his energy angry with God and the world around him.

You see, we all walk the line between pretending everything is fine and swimming in the abyss - even Sam. Lately, a lot of his days have been pretty dark, with good reason. That last day in Israel, I could see a balance in him. He was ever aware of his reality: he is going to die. But on that day, he also took some time to live.

Throughout the trip, adults were constantly asking Sam, "what can I do for you?"
"Can I do anything for you?"
"Can I amuse you in some way?"
"Can I wheel you closer to get a better view?"
"Can I buy you something? Hold something for you? Get you something to eat? To drink?"

In the airport, on the way home, I must have asked him a dozen of these kind of questions when:

"I know something you can do for me... You can give me your life."

"Sam, if I could, I would in a heartbeat."

I had to turn away before I started to cry.

Three grandparents, two uncles, one tante, two parents and four children make a trip to Israel…(pictured here with Speedy the helicopter pilot)