It's the quiet of the evening that's the most difficult for Brett Wilkening. Quiet usually meant his young son, Sam, was up to something he shouldn't be.
"Or he'd fallen asleep in his room, on top of his toys," said Tina Wilkening, savoring sweet memories with her husband in their East Grand Forks home.
The two share a hearty laugh over another memory, picturing Sam stuck in a pile of toys that grew up around him as he tossed them, one by one, over his shoulder.
"I'd go in and ask if he wanted help and he'd look up and say, 'elp?'" Tina said.
Memories of their little boy are vibrant and still fresh. Sam, who was almost 5, passed away March 2 from complications of a congenital heart defect.
ADVERTISEMENT
Compounding the Wilkenings' tragedy is they had already lost another son, Chase, to a different congenital defect. The boy was only four months and four days old when he died in 2005.
A bright smile
Chase was born with a cleft lip and palate and other physical abnormalities brought on by Goldenhar Syndrome. These were not lethal defects, though he would need surgery.
But the Wilkenings noticed something else was amiss when they brought Chase home.
"He didn't flail his arms and legs like a typical baby," Tina said.
Later Chase came down with a fever and cough, and didn't breathe right, she said.
He was admitted to Altru Hospital and then transferred to a Fargo hospital where he was placed on a ventilator. When his condition worsened, he was sent to a Minneapolis hospital, where he was diagnosed with the most serious form of spinal muscular atrophy, or SMA, for which there is no cure, no treatment.
"We were devastated," Tina said.
ADVERTISEMENT
Chase wouldn't be able to live without a ventilator; he'd never walk, talk or eat anything by mouth, she said. "He had no control of his arms, legs and torso," she said.
"But he could smile."
Chase was so bright and so alert, she recalled. "His eyes lit up when a certain nurse would come in the room. He was a little ladies' man."
Letting Chase go
Tina and Brett searched for an answer.
"We realized we were keeping him here for us," she said. "It was selfish. It was not what would've been best for him."
The couple asked for two weeks with Chase so relatives could travel to Minneapolis to see him. They made the most of the time they had.
"We celebrated every day," Tina said. "When he turned four months old, we had a birthday party. We took tons of pictures. We documented everything.
ADVERTISEMENT
"The staff was absolutely amazing. They made plaster casts of his hands and feet. We even got a portable ventilator and took him outside."
They set the date, July 16, to let him go.
"We walked over there knowing it was going to be the last day we were going to see him," Tina said. "The nurses had sat him up in bed and he just looked at me, smiled the biggest smile as if to say, 'It's all right, Mom.'"
The ventilator was removed and, for the next 11 hours, Chase was held in turn by family members.
"I held him so close I felt that last breath come out of him," she said. "I felt him leave us."
Taking a chance
For SMA to be passed to a child, both parents must carry the affected gene. With testing, the Wilkenings found that they each did. Their chances of conceiving another child with the disorder were one in four.
They decided to try again.
ADVERTISEMENT
"You take a shot," Brett said. "I was hooked, by Chase, on being a dad."
By fall 2006, Tina was pregnant. Early tests revealed the baby did not have SMA, but did have Down's syndrome.
"After a night of thinking about it, I said, 'OK, he's going to have Down's syndrome. So what? Kids with Down's are awesome, wonderful, loving, beautiful,'" she said.
Later fetal testing showed an unusual heart defect that impairs heart function.
When he was eight days old, Sam underwent the first of three surgeries to fix the defect.
"There were wires and machines all over him," Tina said. "It was more stress than I can ever remember."
Short childhood
After months of hospitalization in Minneapolis and Fargo, finally bringing Sam home in February 2008 meant buying a larger house to accommodate supplies and equipment including monitoring and suction machines.
ADVERTISEMENT
"It's hard to put into words the magnitude of stuff he needed," Brett said, not to mention the array of skills they had to master to care for a child with a feeding tube and tracheotomy.
The family enjoyed two relatively normal years, though there were many medical appointments.
Last year, Sam's condition began to worsen after a third heart surgery. Efforts to remove a blood clot damaged his kidneys and liver.
By the fall, his liver failed and his heart function decreased. He contracted a virus which, in persons with weakened immune systems, can be deadly.
"The virus attacked his heart," Tina said. Returning to Minneapolis, physicians told her and Brett that Sam's heart was not going to improve, she said.
"They said they didn't know how much time he had," she said, "but to enjoy him."
Over the next few months, Sam slowly got weaker, succumbing in the end to cardiac arrest, Brett said.
"We fought hard for him, and he was very much a fighter," Brett said. "But he knew when it was time to stop fighting."
ADVERTISEMENT
One regret
"What we went through with Chase helped prepare us for what we went through with Sam," Tina said.
The past year is "fuzzy," Brett said. "It's been draining -- physically, emotionally -- on us. It's taken its toll."
He grapples with the loss.
"We already went through this," he said. "We paid our dues. This was supposed to be the happy ending."
Looking back, he has one regret, he said. "I spent too much time away from him. I want more time."
"I wish there would be more time, to see him grow up. That would have been the best," Tina said. "He had such personality. What he loved, he loved with his whole heart -- his whole, broken heart -- his Elmo, his books, dinosaurs, cars...."
Brett's mother, Betty Wilkening, said the family has been on an emotional rollercoaster ride.
"As a grandmother and mother, it's hard to watch him die," she said. "But it was a blessing the way he went, under anesthesia; he didn't have to experience the pain of a heart attack. It was the kindest way it could have happened for us."
Tina tries to focus on the good memories.
"It was a miraculous thing," she said. "He survived three surgeries only to come home and catch a virus that did him in. We had five good years with Sam that we wouldn't have had otherwise."
"There's a positive side to everything," she said. "That's what has gotten me through, I guess, trying to focus on the positive. It's hard sometimes....
"My life is definitely better for having been Sam's mom," she paused, "and Chase's mom."
Reach Knudson at (701) 780-1107; (800) 477-6572, ext. 107; or send e-mail to pknudson@gfherald.com .
