Today’s guest blogger for Wednesday’s Woman is a freelance writer, wife, and mother. But as we all know, the aforementioned job titles include so much more. Stacey Gill, who is telling it like it is at One Funny Motha, fittingly describes herself as the following:
Freelance writer/mother/household manager/laundress/short-order cook/cleaning lady/personal shopper/chauffeur/nutritionist/social coordinator/tutor/event planner.
Stacey’s honoree for Wednesday’s Woman is someone she met through a writing class. It always amazes me when we engage in an activity thinking we are simply going to improve our skills but finish with something more, like a friend, or something we least expected. This is what happened to Stacey.
Wednesday Woman: The Real Superwoman
by Stacey Gill, One Funny Motha
So often we hear stories in the media of celebrities working to end poverty or rescuing children from desperate conditions in orphanages. Admirable endeavors certainly, but we don’t often hear about those among us carrying out similar heroics without the spotlight or help of countless staff members. On a daily basis. This is that story.
I met Joanne in a writing class, and she seemed ordinary enough with straight brown hair falling in a natural part, dressed simply in jeans and a fleece. But over the course of our memoir class I got a peek into her extraordinary circumstances, and I’ve learned a fair amount. But even now with all that I know I still find her story hard to believe.
Joanne is a wife, mother, teacher and writer, but her job as mother far outweighs all her other roles. We all know of course motherhood is a tough enough gig on a good day. Just getting the kids out the door to school on time or convincing them repeatedly, constantly, daily that homework is a worthwhile endeavor or interesting them in at least frequent if not entirely good dental hygiene are all challenge enough. At least for me. But these typical parental struggles, the ones with which I seem barely able to cope, I’m certain Joanne would welcome. Joanne’s children – both of them – have severe disabilities, neither disability related, neither detectable prior to birth. And Joanne’s journey of discovery with each son is nearly as unbelievable as the life she lives raising two boys with disabilities.
Benjamin was only a few months old when Joanne knew something was wrong. At Ben’s first doctor’s visit the pediatrician had noticed his small head size and suggested taking him to a neurologist. At four months old Ben underwent testing. When the results came back the Friday following the tests, neither Joanne nor her husband, John, was home to get the call. The neurologist left her findings in a message on the couple’s answering machine. Their newborn son’s brain had several abnormalities. She would speak to them on Monday.
In a panic Joanne call the neurologist. She couldn't wait out the weekend without knowing her son’s diagnosis. Over the course of two weeks Joanne and John repeatedly called the neurologist to get more information, but the doctor was vague and evasive on the phone. Knowing they needed a more skilled neurologist, Joanne requested her son’s records and sought a new doctor. Meanwhile she tried to do research on her own. Upon receiving her son’s records, Joanne had discovered the term “lissencephaly” written across the top of his CAT scan. It was the first she’d heard of the term. She asked a friend adept with computers to find out what she could about the diagnosis. Back in 1999 Joanne couldn’t simply Google medical terms. Google didn’t exist.
At the time Joanne said, “There wasn’t a lot of information out there.
”The term only turned up in the name of an online support group. The friend referred Joanne to it, and logging onto the site Joanne learned the harsh reality of the condition. The life expectancy for her son was two years.
“Every month there was a kid who died,” she said of her time in the group.
Joanne then consulted a respected neurologist at Columbia Presbyterian who officially diagnosed Ben with Cerebral Palsy. Further testing confirmed the lissencephaly diagnosis and concluded Ben had polymircogyria (PMG) as well, which meant Ben’s brain was primarily smooth where the typical brain has many pronounced folds and ridges. Leaving the doctor’s office, Joanne headed straight across the street to the University bookstore. There she searched the racks of medical books for information on her son’s condition. She found only one small paragraph.
With the help of the support group, Joanne learned of a doctor in Chicago who specialized in PMG research. A short time later the family was on a flight to meet with the doctor under whose care Ben could participate in genetic studies. When they arrived Joanne and John met with another devastating blow. In Chicago they witnessed “little babies” who couldn’t eat on their own or even swallow. They saw a one-year-old with a tracheotomy “who was practically lifeless.” Even with Ben’s grim diagnosis, he’d always been a happy baby according to Joanne, but on the trip the couple caught a glimpse of what their future might hold.
While kids with Cerebral Palsy can make strides in development, Joanne explained, the condition impairs mobility and their small brains can’t continue to control larger body parts. “They tend to lose oral motor skills. It affects basic automatic functioning.”
That is the true danger of the disability. Joanne pointed out, “It’s not really the Cerebral Palsy that kills the kids but the host of other issues surrounding the condition.” She added, “Some kids would aspirate food and saliva and get multiple pneumonia. That’s what would kill them.”
Ben, though, didn’t seem to struggle with eating. “We were grateful because Ben had good oral motor control and was happy and healthy,” Joanne said.
Then at seven months he started having seizures. Joanne worried about the brain damage the seizures were inflicting. She saw Ben’s happy personality change.
“The kid we knew was slipping away. We thought he’s not going to make it. He’s not going to make it to his 1st birthday just like all these other kids.”
But Ben did make it. He has beaten the odds by a decade no doubt a reflection of a mother’s unwavering love. Joanne devoted herself to Ben as her husband returned to work sometimes gone for regular 18-hour stretches. She conditioned herself to be vigilant. “I learned how to be the nursemaid at home. I took his blood pressure, checked his ears for ear infection because he couldn’t communicate. I became my own little doctor’s office.”
By eliminating some of the guesswork Joanne hoped to avoid constant doctor visits. But with a child who can’t communicate it’s all guesswork. For Joanne that is the toughest part.
“I always worry he might die from something little that we don’t know about.” She continues to be vigilant in the shadow of her child’s death sentence.
But Ben is a fighter and under Joanne’s persistent care, he has arrived at adolescence. Although Ben continues to have daily seizures despite taking three different seizure medications along with a daily regimen of 23 other pills and at 13 “is still very much like an infant,” his joyful soul shines through just the same.
“He loves being around people,” Joanne said. “He’s the one who wants to be up all night when a party is going on. He wants to be a part of everything.”
“With everything that he lacks,” Joanne emphasized, when you connect with him you see his light is always on.
That’s the first half of Joanne’s story.
Be sure to come back next week for the second half of Joanne's story. Also, don't miss a post by today's guest blogger, Stacey Gill at One Funny Motha and follow on her Twitter.
photo credit: mag3737 via photo pin cc