Telling Brian's story
By Phyllis Moore
Published in News on October 26, 2011 1:46 PM
Brian and Jessica Daly's world turned upside down on May 5, 2006, when the now 33-year-old Brian was diagnosed with congestive heart failure.
His ordeal -- the operations, the countless doctor visits, the medicines, the constant worry -- prompted his wife, a librarian, to chronicle the family's battle to maintain a normal family life in the face of the deadly disease that he is still struggling with. Using the hundreds of emails she sent to family and friends, updating them on her husband's progress and how they were managing the ups and downs, she has written has written a book about the struggle, "Brian's Update."
The technical term for Brian's condition is congestive cardiomyopathy. After having a pacemaker implanted, his heart has stabilized and he has not had to spend a day in the hospital in more than two years. And instead of having to see a doctor every week, the visits now are scheduled for every few months.
He had one scare when his pacemaker defibrillator malfunctioned, but otherwise has not had to be on a transplant list. His heart function has also shown improvement, from once being at 6 percent, is now 30-35 percent.
Still, he is sometimes bedridden, partly because of the amount of medicine he has to take and its side effects, which include his gaining 100 pounds.
"I'm still very sick but to look at me, you can't tell. You have good days, you have bad days. ... I'm smart, so I know what I'm supposed to do.
"I'm better but I'm not well by any means."
From the first, Jessica considered Brian's sickness her own.
"I always say, 'When we got sick,'" she said.
But although it was Brian who was sick, it was Jessica who had to carry much of the family's burden. The Daly's have a daughter, Taylor, who is now a third-grader at Wayne Christian School.
"I think the biggest thing for us is we were such a partnership -- in income, the house, Taylor, and then all of a sudden when it happened, it was as if I was a single parent and a caregiver," she said. "Not only was I taking care of someone who was critically ill but I had one child and had to keep up with the house, his medication, keep up with insurance and hospitals and appointments. You either sink or swim.
"A lot of people don't know how to get information and so they don't know that there's help."
So she decided to share what their family has gone through with others who might draw strength from reading about it.
"I want people to understand that the person who's sick, and this isn't taking away from Brian, they get the prayers and the concerns and the caregiver, we're just kind of there," she said. "That's where my heart is. I just feel like there's a need to support caregivers."
She has launched a ministry to that end, hosting her first caregiver conference this summer. It drew more than 70 people. What struck her most was how appreciative attendees were, absorbing the support like a sponge, she said.
"I just wanted them to know that no matter what's going on, God really cares what you want and what makes you happy. He wants the best for you."
It's a belief the couple has adhered to themselves. Instead of dwelling on what they lack, the couple said they have learned to be content.
"I'm very blessed," Brian said. "I got to be a dad, a stay-at-home dad. It wasn't by choice, but I was able to do preschool, I'm able to do school now with a lot of help from my mom."
His wife has been the key, he said.
"At 32, she was faced with all this and how many 32-year-olds are going to stay with this, let's be honest. I'm very blessed to have her," he said.
Brian also said their church family at First Pentecostal Church has been important in helping them. The disease may have weakened Brian's body but it has strengthened the family, the couple agreed.
"It's made us better," his wife said, "Well, we appreciate things more. We appreciate time that we spend with people more."
They marvel at the outpouring of support that has come their way, starting with Daly's former employer, R.N. Rouse.
"They kept my family together. They made sure we were looked after, I will never forget that," he said, noting that the Rouse brothers paid his salary until disability kicked in, some three months later.
"I actually had co-workers there that the first two years, would come to the house. We had great support from them. You get bonuses and for the first two years, my co-workers took some of their bonus money and gave it to us and it was just another way of being provided for."
Their church family at First Pentecostal Church has also been there for them, they said.
The couple admits there are still challenges ahead, but they are confident in their ability to deal with whatever lies ahead.
"Just being able to get up a lot of mornings and as soon as your foot hits the floor, you remember those times you were not able to do that," said Daly. "I take (Taylor) to school every day, I help at school a little bit."
The couple just celebrated their 12th anniversary. It underlined their commitment to one another, Jessica said.
"You think about what you're saying when you get married and it's serious. People get married all the time and those words -- in sickness and in health -- are just part of it."
"I just think that we were best friends," his wife said. "Love and passion and romance, that's all important, but none of that helped us five years ago. ... We were best friends."