Facing a Child's Terminal Illness: Finding a New Therapy in Writing

Scott and Penni Newport of Royal Oak, Michigan, have been facing their son's terminal illness for six years. In fact, their son, Evan, has been sent home from the hospital several times to die.

"When Penni was 35 weeks into the pregnancy, we were told our baby had a 50/50 chance of survival," Scott said. "Our son was expected to die after he was born. When the doctor pulled Evan out, to everyone's surprise, Evan let out a muffled whimper and our journey started."

Evan spent many months in the local hospital and then was moved 50 miles away to a University hospital's Pediatric Intensive Care Unit. Scott and Penni were often told he was going to die, but Evan did not.

"I'd rush to the hospital every time I received the dreaded call. I have to leave it in God's hands. Medicine is not an exact science," Scott explained. "At six or seven months, Evan was diagnosed with Noonan Syndrome. He also had Hypertrophic Cardiomyopathy and lung disease. Most children with Noonan Syndrome who are diagnosed at an early age with the incurable heart disease don't live past two years. Evan was on morphine and other drugs and he never opened his eyes. We never saw him smile until he was ten months old. My wife was at the hospital living there for months with our older son, Noah, while I worked construction. The nurses would take Noah places to do fun things like go to the park. There are so many families stuck at big hospitals. My writing started those early months, with a daily thought, writing down a word of encouragement or something inspirational. I'd give my sayings to other families to hang in their children's hospital rooms. That was my way of coping and trying to find some peace with the unthinkable battle we were fighting"

Scott wrote a piece entitled: "The Warrior Mentality." "We're fighters here, we're not giving up. 1.Warriors know how to take on affliction. 2.Warriors may get knocked down, but we always get back up. 3.For warriors, the greater the battle, the greater the reward," Scott said, as he remembered his writing and his reward, which is one more day of life for Evan,. "One of the nurses told me, I forgot number four. 4. Warriors never go into battles alone. After hearing her, I almost felt that statement should be number one on the list of attributes of a seasoned warrior."

Over many difficult days Scott learned to allow people to help the family. "By allowing people to help us, even strangers, we allow them to use their gifts as well," Scott explained.

The goal was to bring Evan home. "When Evan was eleven months old and after two or three discharge dates were missed, Evan was sent home to die. We had a 24/7 nursing staff in our house and a Hospice team."

Scott built a small addition onto the house for Evan, to make room for all of the equipment and accommodate nursing care.

"Evan came home a drug baby. He needed to be weaned off the morphine and other drugs with methadone. It was a very poor prognosis. But, we've watched Evan grow. He started walking at the age of three and he's a normal kid to us. He can put coins in a bucket with the aid of his home bound teacher. He especially likes throwing our kitchen chairs down the stairs, which always brings a smile to his face" Scott said. "But, Evan wasn't typical, he has an incurable disease."

Today, Evan Newport is six years old. Why Evan has lived longer than other children with a similar diagnosis is unknown.

"We take care of every need, making sure he has his medicine on schedule and we don't keep him locked in a room with his nurses. He's treated as part of the family. It's hard. There's a huge divorce rate in facing a terminal illness because it's so stressful. Every day you think about him dying. I pray before I go to bed, 'Dear God, don't let him die tonight.' You lose friends because Evan's sick. We go to church and have to suction him during the service. If he goes out, you have to take things like the ventilator, the battery chargers and everything, so it's easier to stay home. We've only been out on a date a couple of times together in the last few years, it's hard," Scott explained. "We also give our older son a lot of love and time. My wife taught me a great lesson about balance."

Scott and Penni have faced the reality, even preparing and making funeral arrangements. "The hospital staff told us, 'You need to consider a burial spot for him.' So, we lined up our pastor to do the funeral. Friends put together a DVD of pictures with Noah and Evan and it's set to music. And, when Evan passes, a funeral home said they'd do the funeral for free," Scott said.

Scott started writing on the Exceptional Parent website less than a year ago. "It's therapeutic. It brings things out of you that you didn't know were there. I notice things and appreciate things that once passed me by," Scott said. "With writing, you understand yourself better. You find truth in words."

Truth in words runs in the family. Scott's wife, Penni, sent a handwritten letter to President Bush two years ago saying it would be wonderful if the family could meet him because Evan wouldn't be here for long.

"She didn't save a copy of the letter, she just sent it. We got a call from the White House saying 'You and your family are invited as special guests to the White House.' Evan was a Make-A-Wish child and the Make-A-Wish Foundation made arrangements. We stayed at the Hay-Adams Hotel. When you looked out the window, you could see the White House. We went to the guard gate and they let us in, no search or anything, they invited us in. We met the security guy, we met the cook; we were there for three hours. The plan was for us to meet the President just before he stepped onto the Marine One helicopter. A Marine approached us saying, 'I'm going to help you meet the President.' We waited in an open room below the Oval Office. The room had a fireplace and a picture of George Washington on the wall. President George Bush walked into the room and he picked up Evan from my arms, held him and kissed him. He handed Evan back to me and talked to me, Penni and Noah saying how special we were in keeping Evan alive and thanking us for our hard work. We're a religious family and my mom had asked me to tell the President something. So, I told him, 'My mom wants you to know she prays for you every day.' He thanked us for the prayers. We walked outside and we were in the middle of it, newscasters were lined up, as the President stepped onto the helicopter," Scott remembered. "They took us out for lunch, we had a limo ride around Washington D.C., and we went to the Capitol. I even sat in the Speaker's chair. We went to the Smithsonian and Noah really enjoyed that. One of our nurses came with us and she had a dozen roses laying on her bed in her hotel room. It was a great treat."

People have been unexpectedly generous. "A guy showed up with $10,000, an anonymous donor. The fire department also did a fundraiser for us. They make great spaghetti. They raised $17,000. We've received other donations," Scott said. "You see the good in people as they're stepping up to the plate to help. You find out who your friends are. It's not easy. There are people who can't deal with it. Then, there are people who want to come and see our son. Two days before Christmas, this woman came to the house saying 'I've been praying for your son. I wanted to come by and see him. I have a gift for Evan from my nine-year-old son. He bought it with his own money. He's been praying for Evan and he wanted to buy him something.' It was a children's book. That was incredible. It also allowed her and her family to participate, giving in a tough situation."

Publishers have talked to Scott about writing a book about his experience.

"This is my life and my son's life and the writings are really personal. But, I want parents to know they're not alone. My big mission is to help other parents. We endure every trial and we have every day to be successful. We aren´t going to win with Evan, but when the battle is over we will not be defeated. We had a reason for fighting childhood disease. The death of a child is more dramatic and it's hard to accept. But, everyone has a different way of dealing with it. Not everyone can deal with going into a hospital room and see a small child engulfed in tubes and wires. Life is important even if it's one breath or one smile," Scott explained. "The biggest lesson has been that God is in control and that´s a good thing. I don't have to bear the entire burden and it´s comforting. When I prayed to God to heal Evan, God spoke back to me, not in a verbal way, but it was a message. 'What if I allow Evan to die and greater things come from that?' It's not what I wanted to hear, but the pressure is off me. As a man, I'm a fixer. When you can't fix it, it's frustrating for a fixer. From a secular standpoint, there's been a lot of joy in life while going through this. We may not have a brand new car or a big house, but I appreciate a cup of coffee or a talk with my wife. I talk to the homeless now; I talk with people who have a flat tire. I'm a working father with broken down hands and a broken down child, but Evan has taught us that all people matter."

Scott has found several ways to give back. As a carpenter, he also creates furniture for families with ill children. For a related article on Scott Newport's furniture link to: www.magazine-directory.com/Fine-Woodworking.htm.

To read Scott's stories that appear on the Exceptional Parent website – visit Scott Newport's Blog.

For more information on Noonan Syndrome link to: www.noonansyndrome.org/home.html.

For more information on Hypertrophic Cardiomyopathy visit: www.childrenscardiomyopathy.org.

Pictured: The Newport family at the White House with President George Bush - Noah, Penni, President Bush, Evan, and Scott.