By Lori EhdeZachary Mandel Zwaan will turn 16 on Saturday, defying all medical predictions that he wouldn’t live past 5, or even 10 years old.While his birthday marks a triumphant state of survival, his life story to this point is a heart wrenching tale of high hopes and broken dreams.It’s a story about a 4-year-old boy who recovered from multiple heart surgeries … only to suffer brain damage on the operating table.It’s a story about a couple who lost the child they knew and loved and spent the next 12 years building an uncertain life around the one they took home.But Zach’s parents, Monte and Staci Zwaan, don’t tell their story that way.The rural Kanaranzi couple tells it in a matter-of-fact way that’s as remarkable as the story itself.For Staci, it’s simply about living out the inevitable. "I’ve always believed God had a plan for me before I was born," Staci said Monday. "I was to marry someone as wonderful as Monte, and I was to be blessed with Zach. … God knew that Monte and I could handle it together."Monte said, "I’ve come to the point where I’ll never know why this happened, but I think Zach touched a lot of people in his life."Long haulBut they weren’t always so strong."There’s nothing worse, in my opinion, than watching your child suffer," Staci said.The Zwaans will never forget the year they spent in the hospital for Zach’s heart transplant. "It was horrible," Staci said. Their lives since then have revolved around potentially fatal seizures, intermittent hospital stays and in-home nursing staff.Monte said people still ask how they did it, and his answer is simple. "We had to. What else could we do? Run away?"Zach’s organs were damaged by both the surgeries and the stresses of the transplant, so his lungs are deteriorated, his kidneys are failing and his stomach bleeds.To make matters worse, the medications — he’s now on 11 different kinds — often have painful side effects and some will eventually pose a risk for cancer.But for the time being, he’s getting by with only occasional oxygen support, and he’s managed to stay out of the hospital for almost a year, the longest ever in his life. "We hope this isn’t the calm before the storm," Staci said.New home for ZachFour years ago, Zach moved into the Jackson House, a group home run by Habilitative Services Inc. near the Baptist Church in Luverne."Initially it was hard having him out of our lives, but now, when we look back, it’s been the best thing for everyone," Staci said. "These guys are wonderful for Zach, and the times we have with him are a lot more enjoyable."With Zach in a group home, he learned new routines and skills, and the Zwaans at home got their first taste of normal family living — as bittersweet as it was."As a parent I felt like I was giving up a lot," Monte said. "Because before, we had total control. You don’t want to let go of that part."With Zach’s fragile condition, they know his health could change in an instant, and they’re careful not to plan too far into the future."We’ve always known there’s going to be a time when he won’t be with us, but if he’s going to die, I hope he goes quickly," Monte said. "As a parent, I don’t want to be in the position of deciding whether he should stay on life support."But the Zwaans don’t dwell on what’s to come. "You tend to block that out," Monte said about Zach’s prognosis. "We’ve been told too many times by doctors there’s nothing more we can do, and every time Zach comes through."The Zach they knewThis week, they’re thinking about what life might be like if there were a normal 16-year-old boy in the house"He’d be getting his driver’s license, dating, participating in school events …" Staci said.But neither of them spend much time wondering how life would be with a "normal" Zach."We’ve had Zach for 12 years the way he is now," he said. "You don’t forget, but you put it in your mind that this is the way it is."Staci said she and the girls recently watched a home video of Zach that was recorded when he was 3 years old."The three of us sat there and cried and cried," Staci said. "The girls never knew him like that. He was singing and talking."Zach hasn’t spoken since his heart transplant in 1992. Staci remembers him being rolled toward the operating room saying, "Mommy, no. Mommy, no." After the surgery, he mouthed the words, "Hold me," and they couldn’t because of the mass of tubes running into his little body.Those are some of the hardest memories.Life in perspectiveHaving endured so much, the Zwaans say they approach life differently than most."It helps put your life in perspective," Staci said. "We could tell ourselves nothing will ever be worse than this."They say Zach’s life has a divine purpose."I think Zach has made us better people," Monte said. "It makes your worldly problems seem kind of minute. … You’re reminded of that when you see Zach."Ten-year-old MacKenzi already sees herself as a deeper person for knowing her brother."When I go to the dentist, and it hurts real bad, I think about what Zach went through and then it doesn’t hurt so bad," she said. "I’ve thought about what we’d be like without Zach, and I’d be a different person. … He’s teaching me to be strong."In a second-grade story she wrote about her brother, MacKenzi said, "Zach is like a miracle to me … When he was a baby he got very sick and almost died then, but God knows we need him here. Zach is a huge blessing to me."
