Wednesday's Woman: The Real Superwoman, Part II

What is Wednesday's Woman?

Courage, honesty, authenticity, and humility--any characteristic that speaks to the power of what can happen when we are in touch with our own humanity.  She can be famous or unknown.  She can be working wonders at home or on a global scale.  A Wednesday's Woman inspires.

Stacy Gill, who blogs at One Funny Motha, found someone who, without question, fits the bill.  Part One of her piece, The Real Superwoman is extraordinarily inspiring.  Part II is no less extraordinary. 

Read Part One here, follow Stacy on Twitter here, and read her humorous musing on motherhood and life at One Funny Motha. 

Wednesday Woman: 

The Real Superwoman, Part II
by Stacey Gill, One Funny Motha

When Ben was three Joanne and John decided to have another baby. Joanne had always known even as a young girl she wanted a family, but she made the decision about another child with much consideration and caution.  

“I don’t want to die having buried my only child,” she said. “But I didn't want to bring another child into the world with this disability.”  

So she did her homework.  

“Part of going to Chicago was finding out what the risks were in having another child.”  

When they’d originally seen the expert in Chicago, they learned the problem in her first pregnancy was most likely related to a blood flow issue in her placenta. It was rare and unlikely to happen again. “It was a fluke,” Joanne said.  
Still, she wasn't taking any chances. She saw a high-risk ob/gyn at Columbia Presbyterian and ordered up tons of tests.  

“We controlled everything we could,” she said. “I told the doctor I wanted every test.”  

Even with all the precautions, Joanne couldn't control everything, and after her second son, Sebastian, was born concerns once again began to grow.   

“He had five words at one, but at a year and a half he wasn't using them anymore.”  

Joanne took him to the pediatrician, but the doctor seemed unfazed. Joanne sensed denial, but she’s convinced the doctor’s denial sprung from his sincere desire to spare her from another shocking diagnosis. Relying on her instincts and her knowledge as a special education teacher, Joanne insisted on having Sebastian tested. He was diagnosed with autism.  

“We still went through the process to come to terms with the diagnosis, but it didn't shock us when we heard it.”  

Joanne hired a private speech teacher and entered Sebastian in a preschool where he would have a certified special education teacher working with him in the classroom. In his first year Sebastian made “phenomenal progress.” He began talking in simple sentences, and by the middle of the year he was even potty trained. To Joanne this was nothing short of miraculous. But in his second year his progress slowed and by kindergarten Joanne saw significant problems.  

Since Sebastian was a higher-functioning kid, he didn't fit the typical model for any of the special education programs offered by the New York City Board of Education. Without a program to specifically address his needs, the best solution seemed to be placing him in an inclusion classroom (one where special education students mixed with general education students) with two teachers, one general ed. and one special ed. But the teachers quickly began to complain of Sebastian’s lack of participation. Joanne asked about the various methods they used with him but wound up instructing the teachers on effective strategies.  

Joanne also worked with Sebastian at home. She tried to prepare him for participation in morning circle time by putting together what amounted to mini oral reports complete with photos each night. The next day in class, though, Sebastian simply read off the poster board.  

Then one day early on the school lost him. Although Joanne had warned the school that Sebastian ran away whenever he got scared or upset, he still managed to get away, and the school, which sat next to a highway, left their doors unlocked. Sebastian was found unharmed, but Joanne knew it was time to find a lawyer.  

“I stopped being the mommy and started to be the advocate.”  

Joanne once again started the rounds of visiting schools in all five boroughs including private schools just as she had done the previous year prior to the start of kindergarten looking for a suitable environment for Sebastian. She actually found a private school that was about to open a class for higher-functioning autistic kids, and it was already on a list of schools approved by the NYCBoard of Education. Joanne just had to get a referral from the BOE for Sebastian to attend the school. But the clock was ticking. The school only had a limited number of spots. Joanne pushed for a meeting with the BOE to determine Sebastian’s placement for the following year, but the day before her resolution meeting, she was notified the last spot had been taken at the school.  

The next day she got the approval for private school. “So I had private school funding and nowhere to send him.”  

By that point Joanne said, “Sebastian had severe school anxiety. Everyday he cried. Every day he begged me to find him a new school. I felt I had completely failed him.”  

This from a woman who did everything, everything, in her power to attend to the special needs of one child while simultaneously and often single-handedly caring for every need of her other son. That’s the curse of motherhood. No matter how much you do, you always feel you could have done more.  

“I never felt so desperate and depleted as I did after that experience,” she recalled, a telling statement coming from a parent with Joanne’s history.  

“I just wanted to walk my kids to school.”  

That was Joanne’s dream. To walk her kids to school. But the simple wish eluded her. She would never join the millions of other New Yorkers in the rather ordinary routine of walking their kids to school. Ben’s special needs required him to attend a school located in another borough and now Sebastian would need to be bussed (once Joanne found a school) elsewhere as well. Joanne and her husband even considered moving to Manhattan just to make the education of their two sons a little more manageable.  

“We’ll sell everything and move into a two bedroom in Manhattan, and we’ll walk them to school.”  

In the end the two New York natives sold their Brooklyn home and moved to the New Jersey suburbs to be in a school district that would serve the needs of both their children. And while Joanne misses the life she knew in Brooklyn, she’s certain she made the right decision.  

“On the last day of school when all of his workbooks came home, I opened them up, and they were all blank.” She realized then that kindergarten had just been “a babysitting service.”  

Through it all Joanne never stopped working her day job. She is a special education teacher in a preschool in Brooklyn, which she says in no way prepared her for the life she now lives. Although she no longer resides in the city, Joanne still drives into Brooklyn each day for work. She gets her kids off to school, leaves for work and returns home just in time to get her kids off the bus.  

“Sometimes I wish I could do another job. It’s good and it’s bad. I have a parent’s perspective, but sometimes I relate to the parents too much emotionally. I never get the break.”  

No, she certainly doesn't, which is what I find so astonishing. I’m sure we’d all like to think we’d do the same in Joanne’s position. We would remain strong. We would do anything for our child. We would persevere. But I question myself. Could I really do it? How can anyone do it? It seems almost beyond human capability. But Joanne manages, and she does so with her career, her marriage and her humor in tact. Those are things I find difficult to handle on any given day, and I’m not nearly under the strain Joanne is.  

I know I can’t change things for Joanne, but I can in my small way with this piece pay tribute at least to a woman who is remarkable in her extraordinary strength, unflagging determination and unbreakable spirit. More than admire Joanne, I am in awe of her.  

Joanne is working on a memoir about her experience raising two sons with severe disabilities.  Stay tuned to Sperk* and One Funny Motha for more information on the memoir.  








photo credit: atlnav via photo pin cc

photo credit: Patrick Hoesly via photo pin cc

Wednesday's Woman: The Real Superwoman

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 1^st 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.  

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