'Out of nowhere'
Katie and Will wanted to keep Jack as comfortable as they could, keep him "as Jack as he could be," and had just started the process to enroll him in pre-kindergarten at John Archer, which would begin in October.
"Then out of nowhere, in June, he started having issues with his heart," Katie said.
While most people's oxygen levels are at 100 percent, Jack's had always been at 75 to 80 percent, and he learned to live that way. But it was like someone flipped a switch, Katie said, and Jack gained a ton of weight and he was struggling for a breath. During a trip to Hopkins' emergency room, Jack's heart rate was 250 – it's supposed to be around 90. The racing heart caused Jack to retain fluid, which looked like weight gain.
After a week in the intensive care unit, Jack went home, but within 48 hours the same he was having the same problems again.
Katie and Will knew the heart problems would eventually be an issue, "no one can live forever with these defects," she said.
"The doctors told us he's in heart failure. It has stretched to the point where he can't take anymore. It's done it's job as long as it can possibly do, and it's starting to give out," she said.
There is a surgery to fix it, and doctors told Katie that if Jack didn't have problems besides his heart, they would have already done it. There was only a 50 percent chance Jack would make it through the surgery, and it wouldn't improve his quality of live because of his developmental problems.
"Will and I decided not to do it. It wasn't going to do anything for him, affect the outcome. Why put him through that, more pain, more surgery. He's been through so much, I can't do it do him," Katie said, especially if they could be right back in the same place six months later and his heart began failing again.
With his heart failing, and Katie and Will choosing not to do the surgery, their options were limited. He could no longer stay at the hospital, which couldn't do anything to treat him, and his care was too much for Katie and Will to handle. The doctors told the Lymans about Dr. Bob's Place, one of the only licensed pediatric hospice centers in the country, and "we're extremely lucky to have it here.
It was a hard decision, but Katie said it was the best one for Jack, and Dr. Bob's Place, drbobsplace.org, has been "just right for him," she said. Everyone there is strictly about Jack and all about his comfort. And it let's Katie be "just a mom" to her son.
Jack is starting to get weaker, he's not as rosy cheeked as he usually is. He sleeps a lot because he's tired. He's not hooked up to a bunch of machines other than oxygen, he's in a nice bed, in his own clothes, which makes it "more comfortable for all of us."
Like Jack, Katie has good days and bad days, and on the bad days, it all hits her.
"Since he's been at hospice, it's become more real. We realize he's deteriorating, it's a daily realization now," Katie said. "We just love Jack to pieces. The family is sad. We're all pulling together, hugging each other, helping each other. We knew this time would come, we were just hoping we'd have more time before it did."
Katie has moments when she can't comprehend what's happening and she cries all day, but other times, when she's with him, "he's in my lap, I'm cuddling him and I want to stay happy. I don't want him to feel the sadness and the stress. I try to be happy when I'm here. But there are plenty of times I drive home in tears."
Bills racking up
Will works at KCI Technologies in Sparks; when they got pregnant they planned for Katie to stay home and take care of Jack and any other children they might have. They have good benefits, but the bills are coming in fast. Between January and July, Jack had nine hospital stays.
"Even if we only have to pay 20 percent, that's still a lot," she said. "We couldn't get one bill paid off before another would come in. We couldn't get ahead. That was rough, the bills were backing up."
Once Jack got into hospice and they talked to social worker about funeral expenses and how much that cost, "we thought, what are we going to do? Who has $5,000 at the drop of a hat? I know we don't."
Will's mom started a fundraising site for the Lymans. The goal is to raise $5,000 by Oct. 16; to date, $2,635 has been donated.
"People I don't even know have donated money. I'm just blown away by the generosity of people. It's overwhelming... it's so awesome people care enough to do that."
Anyone who is interested in helping Katie, Will and Jack can go to http://www.youcaring.com. There, type in Jack's last name and you'll see his picture and his story.
Katie and Will have talked about having more children, but it hasn't been possible given Jack's medical problems. It hasn't been ruled out, but they may take some times for themselves first.
"We were married exactly one year when Jack was born. Our whole first year was this crazy pregnancy then all the hospital visits," Katie said. "Maybe that time is now, for us to be together as a couple."
For now, Katie and Will are just enjoying the time they have with Jack, holding him, hugging him and thanking God for the time they've had.
"I kind of hope that when people hear about Jack, maybe they hug their kids a little tighter. If a good thing comes out of this, I hope people think how lucky they are," Katie said. "I was leading a blessed life and didn't realize it until Jack came along. Now I stop and thank God for the little things so much more."