Fallen Through the Cracks
By: Crystal Britt
By: Crystal Britt
JACKSON, Mo. - It's happening more and more. Hardworking Americans making "too much", but not enough to get by.
The Retherford family from Jackson knows the frustration all too well. Barb Retherford says an agency once told her if she and her husband divorced, they sold the farm...she quit her job and stayed home to care for their disabled children then may be...just may be they'd qualify for some sort of assistance. Meet the family and you'll quickly learn, that's not a solution.
Zach, 13 and Emily, 10...a brother and sister who share so much, including some of the biggest challenges of their lives. They're ones few could fathom and even doctors can't explain.
"As far as I knew, (it was a) normal pregnancy," said Barb Retherford. Zach was born a seemingly healthy baby, the joy of his parents lives. Months later Mark and Barb noticed their little one struggling to sit up.
"I guess when he was about eight months old the doctor said he was going to send us to a neurologist." Barb said.
The likely diagnosis...Cerebral Palsy.
"We went ahead and decided to have another baby because Cerebral Palsy is not a genetic thing and the chances of having another was no different than any other," she said.
When baby Emily was about a year old her parents noticed she wasn't talking. So, back to the doctor they went. Turns out neither Zach or Emily have Cerebral Palsy, but something similar called Static Encephalopathy.
"He's a carrier, I'm a carrier. The chances are I guess one in four of us having a child like that and of course we had two," Barb said.
The children's conditions cause their muscles to tighten. They walk mostly on their toes. Perhaps their biggest struggle is communication. Both are nonverbal.
"I wish I could get them talking because their whole world would change for them," Barb said.
While frustrated and completely dependent, Zach and Emily love life and people.
"We just live day for day and we haven't ever asked a question of how long these kids are going to live. Will it be a long life? We don't...nobody knows the answers to down the road," said Mark Retherford, their father.
Life for Mark and Barb is proving more and more difficult.
"Now I'm frustrated with it to be satisfied as a mom about the way things are. I should keep trying to get something to improve it and make it better for them," said Barb.
Both Mark and Barb work full time, living paycheck to paycheck.
"This is like a book that's never been written. There's not a how-to book on how to do this," said Mark.
For years they've tried to do it alone, but now realize they need help. They've applied for financial assistance.
"A lot of the things, they say we make too much money," ??/ said.
They've been denied for Social Security, Medicaid and more. A letter in the mail from the Sikeston Regional Office gave them a small glimmer of hope.
"We qualified, but there's no money," said Barb. That's not uncommon.
"There's an estimated 27,000 Missourians with developmental disabilities," said Terry Regenold. Regenold is the assistant director at the Sikeston Regional Office, an agency helping people in nine area counties who suffer from mental retardation and developmental disabilities.
There are so many stories similar to the Retherford's, and just not enough money to go around.
"We haven't seen cuts in the last few years, but we haven't seen a great deal of growth," Regenold said.
So, there's a waiting list, putting the highest priority people at the top.
"You might have folks at an emergency level, that if they didn't get the support they need it could result in a catastrophe for the family," said Retherford.
So, the Retheford's continue to wait...hoping someone, somewhere out there will point them in the right direction. Meanwhile, they're focused on giving Zach and Emily the lives they deserve. Mark says it's faith that gives them hope for tomorrow.
"When we first found out, I was worse at this than Barb was because I was mad. I just wanted a normal little boy that could help me on the farm. It took me a long time to get over it. You can't blame God for it. God is the one who carries us through this," said Mark.
It's not just financial support, but the Retherford's also need resources. They're looking for anyone who might know of games, activities or toys that might help Zach and Emily. Terry Regenold with the Sikeston regional Office says sometimes it takes a family putting their story out there for someone to help lead them down the right path.