SEWARD -- Melissa Kompkoff sits on the couch in her Fourth Avenue condo, her 11-year-old daughter Samantha curled up against one side, husband Keddie holding her hand on the other. The light coming in the side window plays across her face so that one minute she's shadowed, the next illuminated. She wipes her free hand across her face, smiles shakily. She's talking about her family, about being a mother.
She's talking about her son, Joshua, who passed earlier this year after a long battle with muscular dystrophy.
Joshua, who was 19 at the time of his death, was diagnosed with muscular dystrophy when he was 4. Kompkoff was living in Cordova with her former husband back then.
"We made all of these plans," she said. "Josh was going to be the president or a wrestler or a brain surgeon. I even gave up commercial fishing because he didn't want to go out."
Josh was diagnosed with Crohn's disease, an inflammatory disease of the intestines, when he was 18 months old. A few years later, Kompkoff noticed the difficulties he experienced climbing stairs and how he couldn't get up from the floor as easily as most children his age. After a multitude of what she referred to as "invasive" tests, it was discovered that he had duchenne, a common muscular dystrophy that affects only males; the survival rate is late teens through early 20s.
"I did the worst thing possible when I found out," she said. "I went online. I cried and I screamed and I became an emotional wreck."
She shut down, she said. She nearly lost her job.
"There are all those well intentioned things people say and it makes it worse," she said.
After she threw a visiting pastor out of her house, she found a therapist for both herself and Josh. Her marriage couldn't handle the strain, though, and she and her husband separated shortly after Samantha was born.
Guilt and tears
When you're mothering a child that you know is going to die, you can't accept it, Kompkoff said. You can't allow yourself to believe in endings. You can't think about it. You just can't.
"You have people who say, 'At least you get to say goodbye,' but you don't because you don't believe it. You fight so hard to beat it. It's like a marathon where you never cross the finish line."
So you chase cures. You seek solutions. You cast out for hope.
"Then came a time when we let Josh decide and he says, 'I'm tired.' And then I go to my bedroom and I cry and cry," she said.
Caring for Josh took over the family dynamics, something which Kompkoff still feels guilt about today.
"When he was small, we were always at the park," she said. "When Sam came along, I could count on my hands the number of times we went to the park."
Having the family focused on Josh changed Sam, she said. Maybe it took something away yet it also made her stronger, more independent, more mature.
"You change your focus," she said. "Instead of going to the park, you teach her how to change the dressing. It's not optimal having your daughter as a nurse, but you don't want it to all be a dirty little secret either."
Kompkoff hates it when people tell her how strong she is.
"I'm not strong," she said with a shrug. "When your child is lying in bed and can't roll over, it doesn't matter if you had to get up six times in the night and still get to work. You do it because you don't have a choice."
Caring for Josh was also hard on her body, hard on her back.
"Once I had a flat tire and I broke down in a crying fit. Then I got out and changed that tire."
The family developed a dark sort of humor to get through rough times.
"We made a lot of little interpersonal jokes," Kompkoff said. "Josh was awesome. He was a typical teenage boy."
Each day after she arrived home from work he called her into his room and said, "Hug me. I love you and missed you."
"It was so amazing," she said. "We had our lives and there were no locked doors. There were things I didn't necessarily want to know but he didn't keep secrets from me."
She remembers Josh's graduation from high school last year as an endearingly special moment, a milestone the family didn't expect to reach.
"It was everything to us," she said. "On a worldwide scale it probably doesn't mean much. To us, it did. It was his dream, and we saw it happen."
New life
Two weeks after Joshua died, Kompkoff discovered that she was pregnant. The baby is due in October.
"It was bittersweet when we found out," she said. "I'm still reeling from Josh."
If the baby is a boy, there's a chance it could have muscular dystrophy. Kompkoff plans to have it regardless.
"Even if it's a boy and it has what Josh had, we'll get through it," she said. "We're 20 years ahead, medically. There have been advances."
She feels better prepared this time. She no longer takes things for granted. She loves being a mom. And she's different now.
"I grew up and didn't even realize I hadn't grown up until I had Josh. Every day it was not me teaching Josh, it was Josh teaching me."
The baby is a chance to do it all over again, Kompkoff said, her eyes filling with tears.
"I actually asked Sam the other day, 'Are you going to tell the baby about Josh?' Josh is part of our life. His ashes are on the mantle. His pictures are on the walls. There's no way we won't talk about Josh."
Kompkoff wants their new baby to know what Josh went through, and what an inspiration he was. She wants to pass down his stories, such as when he was voted prom prince at his junior prom.
"He was so amazing that night," she said. "He was so happy, and those kids were so good to him."
Josh, she said, is her hero.
"It takes strength and faith to live your life like that. As a mother, I'm glad I've been a part of it all."
Contact the writer at editor@thesewardphoenixlog.com. This story is posted with permission from Alaska Newspapers Inc., which publishes six weekly community newspapers, a statewide shopper, a statewide magazine and slate of special publications that supplement its products year-round.