Posted 2:07 am Sunday, August 26, 2012
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Casen's Crusade; family channels grief into raising awareness
By Tom Monzingo
tmonzingo@tylerpaper.com
EDITOR'S NOTE: This is part of a series of occasional stories on Casen.
HOLLY LAKE RANCH — When talking about Casen, her 5-year-old grandson, Pamela Cameron gets a faraway look in her pale blue eyes.
“When you lay him down at night, and you hold his hand and he goes to sleep, it's the most precious thing in the world. How can you not ask why?” she said, an ocean of tears threatening to spill down her cheeks as she stared at the kitchen table. “I sit … night after night when he's here, and I don't get it, but I know what the good Lord wants me to do and that's take care of him.”
“Why” is a question that's plagued her and her son, Corey, since they were told about Casen's illness 13 months ago. Casen suffers from a rare neurological condition known as Batten Disease. Slowly, the genetic illness has robbed him of his ability to speak, eat, walk, see and even hold onto things.
It is a fatal disease affecting about 1,200 people around the world. There is no cure.
tmonzingo@tylerpaper.com
EDITOR'S NOTE: This is part of a series of occasional stories on Casen.
HOLLY LAKE RANCH — When talking about Casen, her 5-year-old grandson, Pamela Cameron gets a faraway look in her pale blue eyes.
“When you lay him down at night, and you hold his hand and he goes to sleep, it's the most precious thing in the world. How can you not ask why?” she said, an ocean of tears threatening to spill down her cheeks as she stared at the kitchen table. “I sit … night after night when he's here, and I don't get it, but I know what the good Lord wants me to do and that's take care of him.”
“Why” is a question that's plagued her and her son, Corey, since they were told about Casen's illness 13 months ago. Casen suffers from a rare neurological condition known as Batten Disease. Slowly, the genetic illness has robbed him of his ability to speak, eat, walk, see and even hold onto things.
It is a fatal disease affecting about 1,200 people around the world. There is no cure.
Finality
A little more than a year ago, after Casen suffered a rash of inexplicable seizures and a string of misdiagnoses, a muscle biopsy on Casen confirmed what doctors believed.
“We knew when they called and said that they wanted all the family down there that it wasn't good,” Pamela said. “It can't be good when they ask you to bring your whole family.”
Casen suffers from the late-infantile form of the disease, which, between the ages of 8 and 12, claims the child's life.
In moments at the doctor's office, the family learned that Casen's life expectancy would be cut by almost 90 percent, with no chance for that to change.
“We stopped at Razzoo's in Mesquite,” Corey said, his eyes staring at empty space as he recalled the June day they got the diagnosis. “We sat there a long time.”
That day, Wes Bynum said, Casen's family began grieving the loss of their son.
Bynum is grief coordinator for Hospice of East Texas — a nonprofit that works with terminal patients and their families dealing with loss. In the recent months, Corey said they've gotten involved with Hospice to prepare for the inevitable.
“As a society, in America especially, we're just not use to dealing with death,” Bynum said.
Centuries of medical research and improvements leave people far removed from the life cycle, he said. The expectations have changed, and that has complicated people's ability to cope.
“I think it's harder for us to accept that kind of diagnosis,” Bynum said. “It's harder for us not to believe that there's somebody somewhere with an answer.”
Bynum said society tends to rank death as more or less traumatic based on the circumstances because of those changed expectations. That makes dealing with mortality all the more complicated.
“We don't want to think of death as touching every age of society,” he said. “That's one thing that's really apparent when you start looking at it, is that death comes to all ages.”
“We knew when they called and said that they wanted all the family down there that it wasn't good,” Pamela said. “It can't be good when they ask you to bring your whole family.”
Casen suffers from the late-infantile form of the disease, which, between the ages of 8 and 12, claims the child's life.
In moments at the doctor's office, the family learned that Casen's life expectancy would be cut by almost 90 percent, with no chance for that to change.
“We stopped at Razzoo's in Mesquite,” Corey said, his eyes staring at empty space as he recalled the June day they got the diagnosis. “We sat there a long time.”
That day, Wes Bynum said, Casen's family began grieving the loss of their son.
Bynum is grief coordinator for Hospice of East Texas — a nonprofit that works with terminal patients and their families dealing with loss. In the recent months, Corey said they've gotten involved with Hospice to prepare for the inevitable.
“As a society, in America especially, we're just not use to dealing with death,” Bynum said.
Centuries of medical research and improvements leave people far removed from the life cycle, he said. The expectations have changed, and that has complicated people's ability to cope.
“I think it's harder for us to accept that kind of diagnosis,” Bynum said. “It's harder for us not to believe that there's somebody somewhere with an answer.”
Bynum said society tends to rank death as more or less traumatic based on the circumstances because of those changed expectations. That makes dealing with mortality all the more complicated.
“We don't want to think of death as touching every age of society,” he said. “That's one thing that's really apparent when you start looking at it, is that death comes to all ages.”
Community
The remoteness of mortality from daily life means when people are plunged into that world, they're accompanied by a sense of isolation, Bynum said, and that's led to an increase in the services offered at Hospice organizations.
Loved ones search for support, and Hospice organizations work to ease the process by which a life after a loved one's death can become normalized again.
“It's very common for people to feel that their situation is atypical,” he said. “It's very common for people to feel that they're going crazy, that everything in their life is abnormal.”
For Corey, a Smith County sheriff's deputy, it wasn't isolation but anger that flooded his mind the day they heard of Batten Disease. He struggled to understand why it was his son who would suffer.
But Pamela said isolation slowly seeped into their lives. Friends stopped coming by as the family tried raise money for their boy and awareness about the disease, an effort they've dubbed Casen's Crusade.
“You eventually get isolated because I don't think a lot of people want to sit here and listen to you talk about Casen all the time,” she said. “They sure … don't want to come around. They don't want to see him.”
One person told Pamela no matter how much she cared for her grandson, it “wouldn't get (her) into heaven.” Another criticized her for “begging” for money.
As they grew to better understand the condition, Pamela and Corey became exposed to the interconnected network of families worldwide, trudging through the same valley of grief and pain.
The people who shied away from their little boy were replaced by a community of people offering and needing support.
Loved ones search for support, and Hospice organizations work to ease the process by which a life after a loved one's death can become normalized again.
“It's very common for people to feel that their situation is atypical,” he said. “It's very common for people to feel that they're going crazy, that everything in their life is abnormal.”
For Corey, a Smith County sheriff's deputy, it wasn't isolation but anger that flooded his mind the day they heard of Batten Disease. He struggled to understand why it was his son who would suffer.
But Pamela said isolation slowly seeped into their lives. Friends stopped coming by as the family tried raise money for their boy and awareness about the disease, an effort they've dubbed Casen's Crusade.
“You eventually get isolated because I don't think a lot of people want to sit here and listen to you talk about Casen all the time,” she said. “They sure … don't want to come around. They don't want to see him.”
One person told Pamela no matter how much she cared for her grandson, it “wouldn't get (her) into heaven.” Another criticized her for “begging” for money.
As they grew to better understand the condition, Pamela and Corey became exposed to the interconnected network of families worldwide, trudging through the same valley of grief and pain.
The people who shied away from their little boy were replaced by a community of people offering and needing support.
“We may have lost friends, but we've gained tons of them,” Pamela said.
The community is particularly strong online and through social media.
“I never knew a boy who smiled as much as you. When you show someone a wonderful smile like that, it is like giving the person a special present. I just LOVE those smiles and I love you,” writes New Jersey resident Sheryl Heffernan on Casen's Facebook page.
Though she's never met Casen, Mrs. Heffernan writes to him daily about any and everything, just to say she's there.
She said that if she ever wins the lottery, the former nurse would immediately buy a plane ticket to Texas.
“In my heart, they're next door,” she said by phone. “But on a map, they're so far away.”
Mrs. Heffernan is among more than 1,600 followers on Facebook who keep up with Casen.
Pamela said the friends Casen and his family have made a difference in their lives.
“How can you go wrong with people like that?” Pamela asks.
But that community is a double-edged sword.
“Since Jan. 1, we've lost 10 children. Ten children have died from Batten Disease this year,” Corey said. “We're not even to the end of the year yet.”
Mariah, Ryan, Broxton: Corey can call out their names as if he'd known them for years, though in reality, most of them he's never met. It doesn't make the loss any easier.
The community is particularly strong online and through social media.
“I never knew a boy who smiled as much as you. When you show someone a wonderful smile like that, it is like giving the person a special present. I just LOVE those smiles and I love you,” writes New Jersey resident Sheryl Heffernan on Casen's Facebook page.
Though she's never met Casen, Mrs. Heffernan writes to him daily about any and everything, just to say she's there.
She said that if she ever wins the lottery, the former nurse would immediately buy a plane ticket to Texas.
“In my heart, they're next door,” she said by phone. “But on a map, they're so far away.”
Mrs. Heffernan is among more than 1,600 followers on Facebook who keep up with Casen.
Pamela said the friends Casen and his family have made a difference in their lives.
“How can you go wrong with people like that?” Pamela asks.
But that community is a double-edged sword.
“Since Jan. 1, we've lost 10 children. Ten children have died from Batten Disease this year,” Corey said. “We're not even to the end of the year yet.”
Mariah, Ryan, Broxton: Corey can call out their names as if he'd known them for years, though in reality, most of them he's never met. It doesn't make the loss any easier.
“I zone out. I just go on until I say, 'That's enough, do what you've got to do, get strong again,'” he said. “I make angel wings with a ribbon and the child's name on it, and I post it on the page for the parents in honor of the children.”
For Pamela, seeing the death of a Batten child can ruin a day. It leaves a crushing sense of loss that can defeat her on the best of days, she said.
Each loss is a reminder that Batten disease is fatal.
For Pamela, seeing the death of a Batten child can ruin a day. It leaves a crushing sense of loss that can defeat her on the best of days, she said.
Each loss is a reminder that Batten disease is fatal.
Legacy
Bynum said the support Casen's family receives from that network is important in learning to live with the inevitable result of his devastating illness. It doesn't make it easier, but he said it helps restore some semblance of balance to life.
“After death of a loved one, whether a child or whomever, your life will never be like it was before,” he said. “So the grieving process is to get us to that place where we accept life as it is now.”
The process of finding that balance takes two forms: instrumental and intuitive grief.
Pamela and Corey know both forms, and they experience them on a daily basis.
At a Smith County Peace Officers Association benefit for Casen at the beginning of the month, his own presentation choked him up more than once.
The video slide chronicles his son's life before and after the diagnosis. It is the product of months of work, Corey said. In all the time working on what he'd say when facing a room full of colleagues and friends, it never got easier for him.
“I didn't sleep very well that night,” Corey said of the day before the luncheon. “I knew it was going to be hard, not as hard as it actually was, though. It's something that you just have to do.”
The tears and the heartache are what's commonly considered grieving — it's the intuitive side, Bynum said.
But what's born out of that grief and pain in some cases is known as instrumental grieving.
Grief is love extended after death, and for many, channeling that feeling into action is essential.
“After death of a loved one, whether a child or whomever, your life will never be like it was before,” he said. “So the grieving process is to get us to that place where we accept life as it is now.”
The process of finding that balance takes two forms: instrumental and intuitive grief.
Pamela and Corey know both forms, and they experience them on a daily basis.
At a Smith County Peace Officers Association benefit for Casen at the beginning of the month, his own presentation choked him up more than once.
The video slide chronicles his son's life before and after the diagnosis. It is the product of months of work, Corey said. In all the time working on what he'd say when facing a room full of colleagues and friends, it never got easier for him.
“I didn't sleep very well that night,” Corey said of the day before the luncheon. “I knew it was going to be hard, not as hard as it actually was, though. It's something that you just have to do.”
The tears and the heartache are what's commonly considered grieving — it's the intuitive side, Bynum said.
But what's born out of that grief and pain in some cases is known as instrumental grieving.
Grief is love extended after death, and for many, channeling that feeling into action is essential.
“When you're facing a life-limiting illness, you're losing control, so that's a way to put control back into your life,” Bynum said of causes and organizations such as Casen's Crusade or Mothers Against Drunk Driving. “It allows a way of expressing that energy that grief is.”
Corey and Pamela pour energy and money back into the network of support that's developed around them.
There are plans to volunteer for charitable organizations that aid children and families suffering from debilitating illnesses, such as the Make a Wish Foundation or Dallas-based Skyward Bound Ranch, which works with autism.
There's a mother of a Batten child Pamela and Corey know in Canada. Each month she gets a certain allotment of syringes needed to feed and administer medicine to her child, but they aren't enough to last through the month, Pamela said.
So Pamela buys an extra box of the same syringes they buy for Casen at 42 cents apiece and mails them north to the family.
“I think, 'Well, how many people have helped us?' We're blessed. We've been able to get him everything,” she said. “God provides for us, and maybe we can help provide for someone else.”
Under the circumstances, many people may think calling themselves blessed is a stretch for the Cameron family. But Corey said that's how they see things.
“I look at things differently than a lot of other people,” he said. “I know God puts things in our lives for a reason. What the reasons are, I can't answer.”
Neither he nor Pamela claim to be able to answer the questions that have plagued them since Casen's diagnosis. They can't answer what situations their little angel will face tomorrow or in the next month. They can't answer how the disease will affect him in any time frame, but there is one question about the future they can answer.
Corey and Pamela pour energy and money back into the network of support that's developed around them.
There are plans to volunteer for charitable organizations that aid children and families suffering from debilitating illnesses, such as the Make a Wish Foundation or Dallas-based Skyward Bound Ranch, which works with autism.
There's a mother of a Batten child Pamela and Corey know in Canada. Each month she gets a certain allotment of syringes needed to feed and administer medicine to her child, but they aren't enough to last through the month, Pamela said.
So Pamela buys an extra box of the same syringes they buy for Casen at 42 cents apiece and mails them north to the family.
“I think, 'Well, how many people have helped us?' We're blessed. We've been able to get him everything,” she said. “God provides for us, and maybe we can help provide for someone else.”
Under the circumstances, many people may think calling themselves blessed is a stretch for the Cameron family. But Corey said that's how they see things.
“I look at things differently than a lot of other people,” he said. “I know God puts things in our lives for a reason. What the reasons are, I can't answer.”
Neither he nor Pamela claim to be able to answer the questions that have plagued them since Casen's diagnosis. They can't answer what situations their little angel will face tomorrow or in the next month. They can't answer how the disease will affect him in any time frame, but there is one question about the future they can answer.
“When Casen does pass, I want to take his crusade, Casen's Crusade, and change it into a 501c3 (nonprofit), and then anything that we receive donation-wise, equipment, any of equipment we have, I want to donate it to another family that is not as fortunate as us,” he said. “I'm not going to stop. Keep the awareness out there. That's the only way to do it, is to keep going.”
Grief is love extended, Bynum said, and Corey takes some solace in the fact that the love for his son will continue. They plan to work to raise awareness until a cure is found, he and Pamela agreed.
“(Casen's Crusade) started for him and, in my opinion, it's going to be ongoing,” Corey said. “I'll know that he had something to do with this, and he'll always be a part of it, regardless of whether he's here or not. Nobody can take that away from me.”
Grief is love extended, Bynum said, and Corey takes some solace in the fact that the love for his son will continue. They plan to work to raise awareness until a cure is found, he and Pamela agreed.
“(Casen's Crusade) started for him and, in my opinion, it's going to be ongoing,” Corey said. “I'll know that he had something to do with this, and he'll always be a part of it, regardless of whether he's here or not. Nobody can take that away from me.”
