A Chance for Shawna, Chapter 5

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FINDING CLOSURE
It was 1986, about 10 years after Shawna’s first seizure, seven years after her surgery, that I suspected Rasmussen’s Encephalitis, an extremely rare disorder I had read about in a medical encyclopedia somewhere. But I couldn’t get any of her doctors to actually say that’s what it was, not even the surgeon who operated on her. Everyone wanted to call it “focal epilepsy of unknown origin”. This frustrated me, because I needed to call it something. I needed to give some kind of definition to what had happened to my daughter.

I became convinced that doctors didn’t want to give us a “rare” diagnosis like Rasmussen’s, because it would make them appear unconventional to their peers. If it didn’t fit an established diagnosis, it was safer to just say “unknown” than to label it a rare disease. This quagmire left us in limbo for the next 25 years. Granted, I quit searching for a diagnosis after a while, and we all went on with our lives. Then, during a routine checkup in early 2000, a young neurologist at the University of San Diego said to me, “You know she’s classic Rasmussen’s, don’t you?”. I replied, “Yeah, I know. You’re just the first doctor willing to say it.”

A SHIP IN THE NIGHT
I periodically searched the Internet for info on Rasmussen’s Encephalitis, but found really very little, until one day in July of 2008. I can’t explain why it took me this long to find something substantial, as I realize the Yahoo group and other sites were out there long before that, I just didn’t happen to find them. Again, after a while I just didn’t look very hard. I had been living with this for nearly 30 years. I had really put it to rest so to speak. But that day in July 2008, when I discovered news reports about little Jessie Hall and the newly formed Hemispherectomy Foundation, Shawna’s and my world changed forever.

I had always thought we had done everything possible for Shawna. We tweaked medication periodically over the years, and had her on the maximum dosage of four different meds. We tried the vegus nerve stimulator (VNS), to no avail. The frequency of seizures did not change – one or two a day, sometimes more, sometimes less. Gradually, I stopped reporting seizures to the doctor, as every increase or change in meds was hard on her and on us.

But once I found the Hemispherectomy Foundation and the Yahoo health group rs_hemispherectomy, I gradually realized there might be something more we could do.

A SECOND SURGERY?
If during the past 30 years someone would have told me I’d be considering a second surgery for Shawna I would have called them crazy. But that’s exactly what happened in the fall of 2008. After reading the posts from other parents about “re-do” surgeries, I talked with Shawna about it, and with her permission I informed her neurologist at University of California at Davis (Sacramento) that I had been under-reporting seizures and that I wanted him to arrange the testing for a possible re-do.

After all the tests, I got the call in early May, 2009 that the U.C. Davis case conference team had deemed there was a “significant chance” that Shawna could be seizure free with a second surgery, with no further loss of function. No promises, but all the tests had indicated that all of her seizures were coming from what remained of her diseased left hemisphere, the part that was not removed in 1979.

I was surprised to discover that deciding to do a second surgery was a lot harder than deciding to do the first. The first time there was no choice. At a hundred seizures a day she had no quality of life. But now she was an active adult, living in her own apartment. She had a ton of friends and had made a life for herself. The thought of jeopardizing any of that was unthinkable.

We met the doctor who would be doing the surgery, Dr. Edie Zusman, director of adult neurosurgery at Sutter Memorial in Sacramento. She had done her neurosurgical residency at U.C. Davis and occasionally loaned herself out to them. She was young and pretty, which was a bit unnerving. But I soon realized how knowledgeable she was and what a great fit she was for Shawna. She took the time to get to know Shawna’s personality and the essence of Shawna. She understood my fear of losing any part of who, or what, Shawna was to another surgery. She explained that she would have Dr. Samuel Ciricillo, the director of pediatric neurosurgery at Sutter, assist her with Shawna’s surgery. Even though Shawna was 35 years old, Dr. Ciricillo performed hemispherectomies much more often than she did, as this procedure is most often done on children, of course.

One of the things I asked Dr. Zusman was. . why didn’t they do a complete hemispherectomy on Shawna in the first place back in ’79 at St. Louis Children’s Hospital? If they had, things might have turned out very different for her. Dr. Zusman explained that Shawna had one of the most preeminent pediatric neurosurgeons of the time, Dr. Sydney Goldring. He was a true pioneer in seizure surgery. But back in the 70’s they did not have the technology to prevent massive blood loss in a small child like they do today, so that is why they could not perform a complete hemispherectomy. So here we were.

Shawna wanted to go for it. No fear, no hesitation. For the next three months while I pondered the scary possibilities, Shawna kept working on me, urging me to say yes. Finally, in mid-September, 2009 we set the date – November 16.


TO BE CONTINUED

Chapter 4

THE GIFT OF SUPPORTED LIVING

It is so cool to see how Shawna has grown in independence since getting her own apartment. With help, she grocery shops, prepares her meals and cleans her apartment, watches what she wants on TV, has friends over, takes a bubble bath in candlelight when she wants to – basically does almost everything a normal adult woman living in her own place would do. Because Shawna’s speech abilities are very good, she can express her wants and needs adequately to her support staff, which helps them know what she needs from them.
What are these personal attendants like? AWESOME in most cases. All of my fears about what kind of people work in Supported Living Services was replaced with amazement for their dedication, spirit and training. Coincidently, Shawna’s brother Gary, now 29 years old, worked for a local SLS agency (not the same one Shawna uses) as a personal attendant to a young man with Downs Syndrome. Before the agency hired him they put him through a thorough background check, including drug-testing, and this is the standard screening procedure for all of the SLS agencies. Shawna currently has four different personal attendants, all female, who work various shifts 24/7. They are closely supervised by a program manager who conducts regular staff meetings that Shawna also participates in. I have come to highly value the members of Shawna’s staff, and have an enormous amount of respect for each of them. Think of Alice on the Brady Bunch, and you’ll have an idea of the importance these ladies have in our lives!
GO GIRLS!Shawna’s circle of friends and social life has grown vastly since she has been in Supported Living. I know I could not have provided this quality of social life for her in any other way. She and her best friend Cindy, who lives in the apartment upstairs from her and is also in SLS, are the founding members of a group they call “Go Girls”. A remarkable and creative lady named Nancy, who is an SLS attendant for Cindy, helped the girls start this group - another example of how amazing these people are!Go Girls is a group of developmentally disabled women who get together once a month to socialize, for picnics, pajama parties, movie night, and many other activities, facilitated and supported by their SLS staff. It started out to just be Shawna and Cindy, but soon others ladies (many in SLS, but some not) heard about it and wanted to join. Now there are over a dozen members and they even have an official Go Girls t-shirt. There’s also an official Go Girls operating manual – handwritten by Nancy and typed up by yours truly. I wouldn’t be surprised to see Go Girls expand into other chapters and become a state-wide or even a national organization some day!

PEOPLE FIRST, DISABILITY SECOND

Another awesome group Shawna participates in is “People First of California”. This is a grass roots multi-chapter self-advocacy, self-empowerment group of men and women with developmental disabilities, who learn to work together to find their voice within their communities. It is run by and for people with developmental disabilities. At the monthly meetings they discuss issues of importance in their personal lives, such as public transportation, housing, employment, voting rights, and many other aspects of living. They have several social events throughout the year, and a state-wide annual conference in Sacramento that Shawna loves to attend.

THE LANTERMAN ACT

The foundation of California’s services for its developmentally disabled is the Lanterman Developmental Disabilities Services Act, passed in 1969. It has undergone numerous revisions since then, but the basic premise is the same: It is the California law that says people with developmental disabilities and their families are entitled to the services and supports they need to live like people who do not have disabilities. This is this law that established the Regional Center system I described earlier, and the law that provides for Supported Living Services as well as just about every other service social Shawna receives.

THE CALIFORNIA BUDGET CRISIS

Without a doubt the Regional Center system, thus services for the developmentally disabled, will be impacted by the current budget crisis in California. It’s just not clear at this point how the relatively high-cost Supported Living system will be affected. I recently heard that Governor Schwarzenegger proposed revoking The Lanterman Act altogether, but his mother-in-law, Eunice Kennedy Shriver, asked him not to. She is the founder of Special Olympics and a strong supporter of rights for the developmentally disabled.
Nevertheless, the budget crisis is a scary thing and I can’t help but worry about what will happen if state funding is greatly reduced or eliminated and Shawna can no longer afford to live in her own home. Of course, as her family we will always be there for her, she won’t ever be homeless. But it would be a big setback for her that we hope will never happen. We’re watching this budget crisis with deep concern.

THE FUTURE FOR SHAWNA

As I’ve stated in the previous chapters, despite having a hemispherectomy 30 years ago, Shawna still has seizures, though certainly not nearly as frequent or severe as before the surgery. And she still struggles with the side effects of multiple anti-epileptic drugs. But medical science has greatly improved the hemispherectomy procedure in the last 30 years, and we have recently learned that there is a significant chance with another surgery that Shawna could become seizure-free. This is a prospect that is both very scary and very exciting!

TO BE CONTINUED SOON!

Chapter 3

One suggestion I received from a friend who read this story so far was to tell readers what kind of schooling and extra-curricular activities Shawna participated in as she was growing up.
Shawna attended special education classes in the local public schools until she “graduated” at the mandatory age of 22. These were not regular academic classes in the traditional sense, but were structured more to the individual capabilities of each student. Under California law, her educational goals and objectives were monitored by an annual review called an Individual Education Plan, or an “IEP”. She participated in normal school activities, such as school plays, field trips, and Girl Scouts.
She attended a summer camp for physically-challenged kids every year, which included swimming, boating, horseback riding and singing around the campfire. She also participated in a special-needs dance class that put on a fantastic recital at the end of the year. It was for one of these recitals that she got her first formal gown. Shopping for that gown is one of our dearest mother-daughter memories. (Another reminder that I wasn’t missing out on anything).
Shawna was also very active in Special Olympics while growing up, and still is. Despite her right-sided paralysis, she used to love track and field, specializing in the 50 and 100-yard races. However, as she got taller and osteoporosis developed in her twenties, the risk of falling became more of an issue, so we phased out track and field and replaced it with softball, gymnastics and bowling to name a few. (Our concern about bone safety was validated at age 27 when she took a relatively minor spill and fractured her weaker right leg, requiring extensive orthopedic surgery). One of her favorite activities at Mountain Shadows Community Homes was the annual snow-ski trip. This was an amazing skiing excursion for disabled individuals who got to sit in a specially designed ski chair while a trained ski professional held on to it while skiing down a slope. Wow, what a ride! Shawna has always been a dare devil, so this was one of her favorite adventures.
Today, as an adult, Shawna enjoys an adaptive horseback riding class called Ride & Shine. When she first started Ride & Shine, she could not balance her torso very well on the horse, due to the right-sided paralysis. It took a number of lessons given with one-on-one attention to master this. The class also teaches the riders how to care for a horse, including brushing, feeding, walking and giving the horse verbal instructions. Now she is quite competent at riding, an accomplishment that has improved her core upper body strength and has given her a huge measure of self-confidence.
Many people who meet Shawna for the first time, then learn that she lives in her own apartment, wonder how this works. After 8 years at Mountain Shadows Community Homes, by the age of 30 Shawna was ready for the next step in her quest for independence. She had learned about “Supported Living” from some of her friends at her day program (a sort of sheltered workshop), and informed me one day that it was her intention to move into Supported Living – meaning she wanted to get her own apartment.
My reaction to this announcement was, “Uh…well, let’s talk about that another time, okay?”. I could not fathom how in the world that would work! At Mountain Shadows there was dozens of trained staff, including nurses and activity coordinators that made sure Shawna’s daily needs were met and that she had an active social life. I could not imagine how this level of support could be carried out if she lived in an apartment by herself with paid attendants. Who would be in charge of the attendants? Me?? Would I have to hire and train her staff myself?? What if someone stole from her or took advantage of her in some way? No, I concluded, she was not going to live in her own apartment, that was not possible.
About this same time (late 2004) my husband Bob was offered early retirement and we decided to leave the San Diego area and move to the Sierra Nevada mountains in northern California. We both loved the mountains and pine forest, and decided this was where we wanted to spend our retirement years. Of course, that meant Shawna had to move too. Because she was ready to leave Mountain Shadows anyway, she welcomed the prospect of moving to northern California with us. She saw this as the perfect segway to attain her goal of living in her own apartment.
Fortunately, I was able to convince her that the first step was to get her into a new group home at our destination, and from there we would start working on Supported Living. In reality, I was stalling, still unconvinced how this Supported Living thing would work.
Reality hit hard, however, when I soon realized that the group homes in the area we chose to live were not near the quality we were used to at Mountain Shadows. We tried two different group homes in the first year, both eventually becoming unsatisfactory in one way or another. This was a very difficult time for both Shawna and me. She was unhappy, and if Shawna is not happy, I am not happy.
In California there is a non-profit government-funded agency called Regional Center that provides and coordinates services and supports for individuals with developmental disabilities. They have offices throughout California to provide a local resource to help find and access the many services available to disabled individuals and their families. This was one of the reasons Bob and I decided to stay in California after retirement. We could have gotten a lot more for our retirement dollar by moving to a less expensive state like Nevada or Arizona, but we were afraid there would not be the level of services for Shawna in these states that we had come to depend on in California.
With Shawna continuing her relentless campaign for her own apartment and the group homes available being a disappointment, I finally contacted our local Regional Center office in late 2005 to learn more about this thing called Supported Living.
I learned that the guiding principle behind Supported Living Services (“SLS”) in California was to give the disabled individual the opportunity to have what the rest of us take for granted – the right to live in our own home and exercise meaningful control over our lives. SLS includes assistance in selecting and moving into a home within the individual’s budget (typically an apartment), choosing personal attendants, acquiring household furnishings, and becoming a participating member in community life.
There were several agencies in our area that provided SLS services, we learned. All Shawna and I had to do was choose one, and Regional Center would fund them to provide all of the support we needed to make the transition from group home to Shawna’s own apartment.
We found a a nice two-bedroom apartment about 20 minutes from where Bob and I lived. It was handicapped accessible and on the ground floor, with a big sunny kitchen. I was surprised to learn that half of the rent would be paid by the SLS agency we chose, because their staff would occupy the 2nd bedroom.
While we were apartment hunting the SLS agency was assembling Shawna’s potential staff, which would be with her 24/7, one-on-one. Not all SLS clients require 24/7 staffing, some only need part-time assistance, but Shawna definitely needed full time help. The SLS agency would train and supervise the staff on a daily basis. Shawna got to interview every pre-screened candidate and personally approve who she wanted to hire. If she did not like an individual for some reason, they would not be hired to work in her home. Also, it was explained to us that after working with a person for a while, if Shawna decided it wasn’t working out, she could just call the agency and they would immediately replace that staff person with another one of her choosing.
Bob and I were excited, and purchased an apartment full of furniture, including dishes, linens, a television set and all the other things needed to set up a new household - the same thing many parents do for their normal child just starting out. (Again, I wasn’t missing out).
Shawna’s portion of the rent would come out of her monthly SSI check, which included additional funds provided by the state of California. Previously, 100% of Shawna’s monthly SSI check went directly to the group home. But with SLS, Shawna’s check goes into her own checking account, on which I am a signer, and I write the checks for her portion of the rent, utilities and other household expenses, and she has sufficient funds left over for food shopping and recreational spending, such as Ride & Shine. She may not have money to burn, but it’s enough. It makes me wonder what the group homes were doing with all of that money when they were the payee.
Shawna moved into her new apartment on March 1, 2006. The only regret I have is that I waited so long to let this happen.

Chapter 2

I’d like to rewind just a bit, because I feel I glossed over some areas that deserve a little more attention if I’m going to tell this story in a way that might help others. As Rick Warren says in his best-selling book, The Purpose Driven Life, "God never wastes a hurt. Your greatest ministry will most likely come out of your greatest hurt". So as this story might well be my greatest ministry, I don’t want leave anything important out.

As I relayed in chapter 1, a year after Shawna’s hemispherectomy, Keith and I were getting a divorce, and five years later I agreed to let Shawna go live with her father and stepmother. It’s not hard to figure out how the challenges of having a seriously ill child can strike a fatal blow to an already struggling marriage, but one may wonder how a mother who fought as hard as I did to save her child’s life could willingly give up physical custody five years later.

At the time, I really believed the reason I was letting Shawna go was because I was a working single mother with a younger child with special needs of his own, and Keith’s new wife Kay, was a stay-at-home mom. That was the neat and tidy reason. But we all know plenty of working single parents - some with special needs children - who would never willingly give up their child, no matter what the circumstances.

I did not realize it then, but the real reason I was willing to let Shawna go was because I was deeply angry - not at Shawna - but at what had happened to her. I was consumed with unresolved grief over the normal little girl I had lost. Maybe if I didn’t have to take care of her every day, the hurt would ease.

Thankfully, the move turned out to be a good thing for Shawna, not only because Keith was always a devoted father, but because Kay had more objectivity than I did. Shawna learned many new skills and really blossomed into a capable young lady while living with Keith and Kay.

About a year later I met and fell in love with the man who would later become my husband, Bob Edwards. My son Gary, meanwhile, was having a tough time in kindergarten due to his attention deficit hyperactive disorder (ADHD). He had begun some very destructive behaviors, including stealing and lying. And he hated Bob. So when it was time for Gary to start first grade, I again took Keith up on his offer to take him to start first grade with them. It wasn’t for the same reasons as Shawna, but I felt at the time I was doing the best thing for Gary.

Soon after, Bob’s career took him to San Diego, a horrifying three hour’s drive from where my kids lived with Keith and Kay in Lancaster. "How can this work?" I thought to myself. I love this man, but I cannot be three hours away from my kids, no way! Then I found a way. . . I learned to fly a single engine airplane and I got my private pilot’s license, so I could get to the kids often and quickly.

Learning to fly was not something I had ever aspired to, but there was just no other way to get from San Diego to Lancaster and back in one weekend. Bob got his pilot’s license too, and we regularly flew up to get my kids and bring them back to San Diego for the weekend. I thought my children would be impressed with their "pilot mom", but their basic reaction was, "Doesn’t everybody’s mom fly an airplane?" No big deal.

Gary gave his father and stepmom a real run for their money, and combined with Shawna’s special needs, it became too much for Keith and Kay. So by the time Gary was ready to start middle school, the tables were turned and Keith took me up on my offer to take Gary back. Bob and I were married by then and we were certain that together we could give Gary the love and discipline he needed to get back on track, before the critical teen years.

Gary’s adolescence turned out to be the second most painful experience of my life. Gary still resented Bob, and seemed determined to oppose and defy us every step of the way. So it was no surprise to anyone when he ended up in Juvenile Hall at age 16.

Meanwhile, Shawna turned 22, and she announced to all of us that she wanted to move out of Keith and Kay’s and live in a "group home", like many of her friends in Special Olympics did. She had been telling us this since she was barely 18, but we didn’t know much about group homes, and just couldn’t imagine that this would be a good thing. There certainly wasn’t any group homes in the remote desert town where Keith and Kay lived, so Keith asked me to look around in San Diego.

After extensive research, we found Mountain Shadows Community Homes in Escondido, California, which just happened to be only 20 minutes from where Bob and lived. Mountain Shadows (http://www.mtnshadows.org/) is a very unique non-profit organization consisting of a specially designed community of 18 houses where adults with developmental disabilities can live as independently as possible while still having all of their special needs met by trained staff. Each house is named for a tree, and Shawna moved into Orange House with five other girls, and loved it from day one. Finally, I had both my kids near me again.

But Gary was breaking my heart. I spent a lot of time crying, frustrated about what to do. On one particularly lonely night of crying, I told God that I was angry that he let this happen to Gary - after all I had been through with Shawna. Gary was supposed to be my "normal" child I cried to God.

Meanwhile, even though Shawna was happy and doing well at Mountain Shadows, I still had not dealt with my feelings of grief and loss over her illness. I never thought about it consciously, but deep inside I was still grieving the loss of the normal little girl with the blonde pigtails. Every time one of my friends talked about their daughter starting to date, going to college, getting married or whatever, there was a stab in my heart that I would never have those experiences. I had basically been angry for twenty years, without even realizing it.

Here’s where the most phenomenal thing happened to me personally. My anguish over Gary’s problems consumed nearly every waking thought. But suddenly one day, while I was alone and crying about Gary, all of the pain and loss I had kept buried inside for Shawna just evaporated. It was like a ten ton weight had been lifted off of me. . .as if my heart was saying it could no longer grieve for two children at the same time, so it had to let go of one.

Suddenly, I was free from the years of suppressed anger about "what happened" to Shawna, and I suddenly realized that she was the light of my life just the way she was now. It didn’t matter anymore that I would never be the mother of the bride or see her have children of her own. I could finally accept Shawna for who she was and stop mourning the loss of who she would have been had she not gotten sick. From that moment on, I began reveling in the blessing of Shawna, the beautiful daughter who was an extraordinary gift to my life. No more pain, no more anger, just love, appreciation and joy. Ironically, I have my son to thank for that.

I still cried over Gary, but that was balanced by the joy I got every time Shawna and I were together. At Mountain Shadows she had a boyfriend (several of them, actually) and went on dates, she got a job, and had a best friend. It was so gratifying to watch her grow into a bright, articulate and happy young woman. I wasn’t missing out on anything, I realized.

Chapter 1

We arrived home from St. Louis Children’s Hospital just before Christmas 1979. What a joyous Christmas that was, to have our little girl back home with us. We celebrated at Keith’s parents’ home, with his sisters and their families, and with my mother, who had moved from Florida the year before to be near us and help us with Shawna.My mother, Sonia Flynn, has a special place in this story. It was she who actually discovered the medical reference book that first described the surgery to us. She ordered it by claiming she was a nurse (which she wasn’t). It is for this reason that I credit her with saving Shawna’s life. I do not know how long it would have taken for us to learn about the surgery on our own - Shawna’s doctors never said a word about it and in fact denounced it when I showed them the book. My mother passed away in 1986, but I did tell her many times that she gave the gift of life to her granddaughter and I would forever be grateful to her.

In the springtime following Shawna’s surgery, we welcomed a baby boy into our family. Keith and I had gone through years of infertility work to get pregnant with Shawna, and after she got sick we were in no position, financially or emotionally, to go through that again, so we applied for adoption. A year later we were blessed with a two-week old blue-eyed blonde baby boy we named Gary. So while Shawna was still growing in her hair and getting her "sea legs", she was helping mom take care of her new baby brother.

Although Shawna was making wonderful progress getting healthier as the months went on, she still had some residual seizures - more of the staring and twitching variety. I recall the wrenching feeling when we saw the first twitching episode a few days into recovery. Our hearts sank, but we rallied and resolved that we could deal with a few minor seizures because Shawna was so much more alert and vibrant than before surgery. We were concerned nonetheless, when toward the end of summer the seizures seemed to grow more frequent. I was terrified that the surgery was no longer working and we would be back to the nightmare of pre-surgery days before long.

So in the autumn of 1980, we took Shawna back to St. Louis Children’s Hospital to let the pediatric neurologists there see if they could do a better job of adjusting Shawna’s meds than the Los Angeles doctors could. This was not a denigration of our pediatric neurologists at UCLA and L.A. Children’s. But this surgery was unheard of in Los Angeles at the time, so we felt the best place for Shawna was where they had experience with post-hemi kids and close proximity to the surgeon who had performed the procedure. In fact, Keith and I were making plans to move to St. Louis for good, to be near the only doctors who had ever helped our daughter. Shawna’s and my arrival back at St. Louis Children’s was a bittersweet homecoming. The doctors and nurses were both pleased and disappointed to see Shawna again. Keith flew in with baby Gary as often as he could, but for most of the time it was just Shawna and me, living in the neurology ward once again. Thankfully, Keith’s sister, Joyce, took care of Gary during the day while Keith worked. I was very worried, however, how this separation would affect Gary, who was then only five months old. The bond between mother and child was in a critical stage when I had to leave. It was a very painful decision to make, but as always, Shawna’s health loomed as a priority.

That second and final visit to St. Louis proved pivotal in several ways. It took two months, but they got Shawna’s medications adjusted to where she was able to resume her normal life with a minimum of seizure activity. By the time we left, we were down to 1 to 3 flickering or twitching episodes a day and only a few seconds in duration. We could live with that. But that lengthy stay in St. Louis proved to be a turning point in Keith’s and my marriage. We had been emotionally apart but physically together for a long time, and that long separation was the death knell.
Two months after Shawna and I returned from St. Louis, at my request Keith and I were separated and a divorce was in process. I am not proud of this, but that’s what happened. Looking back on it now, I realize I was suffering from years of emotional pain and I spent many months in therapy for the next five years.

As a single mother I had to go to work. I discovered that I really liked being out there in the business world, and I was good at it. But Shawna’s special needs still prevailed, so reluctantly in 1985 I took Keith up on his offer to take Shawna to live with him and his second wife, Kay, who was a stay-at-home mom. It was only twenty minutes away, I rationalized.

As it turned out, letting Shawna live with Keith and Kay at that point in my life was one of the best decisions I ever made. Kay was a fantastic stepmother. She taught Shawna many skills -like dressing herself - things I couldn’t seem to manage because of my emotional connection. Keith and Kay became very involved in Special Olympics and Shawna became a medal winner in track and field over and over.

Meanwhile, I had my hands full with Gary, who had just been diagnosed with attention deficit hyperactive disorder. By the time he was four, I had him in a psychiatrist’s office. When he turned six and it was time for him to start first grade, he was on Ritalin and had had a rough year in kindergarten. Again, I took Keith up on his offer to take Gary and let him start first grade near them. I am not as sure I made the right decision that time. Gary struggled with emotional and behavior issues all through grade school, and although Keith and Kay did everything they could, by the time he was twelve in 1992 Keith asked me and my new husband, Bob Edwards, to take Gary back. (More on that later).

When Shawna was 22 years old in 1996, Keith asked me if I knew of any "group homes" near where Bob and I lived in San Diego, as they had none near them in Lancaster, California. Shawna wanted desperately to be more independent by living away from her parents. So Shawna moved into Mountain Shadows Community Homes in Escondido, California, just 15 minutes from where Bob and I lived.