Schizophrenia: Mental Illness from a Mom’s Perspective
Sky Preston Ballard was born May 31st, 1989, two months before he was due. Admitted to the hospital in premature labor after what was considered by all to be a normal and healthy pregnancy, I was warned daily to expect the worst. It was determined that my baby boy would, in all probability, weigh less than two pounds and have such underdeveloped lungs that there would be no cries upon entering the world. An emergency team was on call and their equipment loomed at the foot of my bed for seven long days. My son’s father, now my ex-husband, was working nearby at the Air Base and came at night to sleep on the floor beside my bed. The fetal monitor attached to my tummy would continually flash, or not flash, a little red heart-shaped light. That little heart became my obsession and my only reassurance that, yes, he was still alive. On May 31st, when Sky finally made his long-awaited debut, he was not 2 lbs and silent. He came into this world 4 lbs 9 oz and screaming. Even as the emergency team whisked him away, I knew, at that moment, that his path in life was going to be one that neither I nor anyone would ever be able to predict.
Due to severely underdeveloped lungs and many complications that followed, my son remained a patient of the NICU ward for the first five months of his life. Upon coming home, he spent the next two and a half years attached to an oxygen tank. We learned to carry that tank around like most people carry diaper bags. Home therapists, trained to work with preemie babies, came to visit on a regular basis. We expected the normal developmental delays of prematurity and took advantage of all services offered to us. Amidst the chaos of oxygen tanks, countless medications, and literally hundreds of trips to various doctors, Sky was a happy, loving, and extremely active little person. When it seemed safe to go back to work, we enrolled him, at the age of three, in his first Day Care facility. It was then, surrounded by other children for the first time, that signs of erratic behavior and hyperactivity began to appear. He simply could not sit still and, for the teachers, this meant hours of chasing him around the room until I arrived to pick him up. Not able to handle the one-on-one attention Sky obviously needed, we were refered to another Day Care. And then another, And then another. Finally, I was forced to leave the high-paying position I had landed and return home as a full-time mom. I enrolled Sky, at age five, in the kindergarten class of what became the first of many wonderful schools to come in Tucson’s District 16. Again, I attempted to return to the workplace. I remember being called early everyday of that first week to come pick him up. The Head Psychologist of the District, Nancy Sargent-Abatte, a woman who, to this day, is such an important part of our lives, explained that we needed to get an opinion about Sky’s behaviors which, in her expert training, seemed totally out of the norm. This lead to a quick diagnosis of ADHD (Attention Deficit Hyperactivity Disorder) by a well-known Behavioral Doctor after just two short visits. This diagnosis, and the next six years of taking numerous prescribed ADHD medications, is what I believe to be the biggest culprit leading up to Sky’s first Schizophrenic epsiode at age eleven. When I began my desperate search for answers several years ago, all that remained of Sky’s medical records were 1100 documents from his birth hospital and several x-rays. All other documents and x-rays from age five months until three years – crucial years at best – requested from the Army Base Hospital had been destroyed, as the Army will do, five years ago without ever contacting me. This has remained the most important and permanent missing piece of the puzzle so I have reluctantly moved foward without it. Interestingly enough, after Sky’s release from the Psychiatric Hospital following the initial episode, the words “ADHD” were never mentioned to me again. With over 1% of the population suffering from Schizophrenia, it is imperative that parents know what signs to look for in their children – especially those born prematurely and those being diagnosed with ADHD, Bi-Polar Disorder, and other PDD’s (Pervasive Developmental Disorders). It is easy to believe, especially for new parents, that what happened to my son could not possibly happen to their child but it something they certainly need to be aware of. In future articles, I will discuss the most recent studies and known causes of Schizophrenia in children – causes that can occur and become precursers for the disease months before they are born. However, there are preventative measures to take and new techniques to help the suffering. Unfortunately, there is no known cure. To all who read this, remember always that knowledge is power and we, as parents, must be hardcore advocates for our children because, ultimately, that is our job in life, and we are the only symbols of hope that they have.
For those familiar with Schizophrenia, an illness that has baffled and continues to baffle the medical community, the mere mention of The Voices can and should send chills down one’s spine. The Voices, auditory hallucinations medically referred to as the “positive” symptoms of Schizophrenia, will call your name, taunt you, insist that you kill yourself, insist that you kill others, harass you in your dreams and during your every waking moment until you either do what they say, admit yourself to a Psychiatric Hospital, or find some way to cope quietly and still function in society. When the Voices rest, which is rare indeed, then the “chattering” often begins – auditory hallucinations disguised as the voices of neighbors, relatives from the past, or the lady who spoke with you in the market check out line. Combined with the sounds of doors slamming, birds chirping, wind blowing, and whatever else the brain can add to the mix, often the only way to find any relief is to sleep.
For my son, the Voices came to stay in March of 2000, making their grand entrance on an unusually cloudy Tucson day as he sat at school with his class. For six months prior to this day, it had been clear to all involved, including his teachers and Doctors, that something was happening. I can only describe it as a slow descent into darkness. My eccentric and lovable son had slowly become hostile and defiant. His sudden bizarre behaviors both scared and angered me. When asked, Sky’s only explanation was that “his brain” was making him act this way. It was obvious that he too was confused and frightened by what was taking place. He became obsessed with medical books and began drawing pictures of his brain on every piece of paper he could find. I was becoming more and more desperate for answers as I felt him slipping away. Our relationship, always so close, became distant and strained as we struggled with our emotions. It never occurred to me what was actually coming. The Doctors treating Sky for ADHD chalked it up to adolescence and it never occurred to them to look into it further. It never occurred to anyone. Now, of course, I stress the need for people to recognize the signs of impending mental illness because, simply, it should have occurred to everyone.
When the Voices of Schizophrenia came to school that day, beginning with a simple but horrifying “Hey Sky, we’re in your brain” and escalating to “kill your familyâÂ?¦you must die!”, I arrived as the paramedics were strapping him to a metal gurney and rushing him to the ambulance. He screamed when he saw me, telling me to run because “the Devil” was in his brain. The teachers, all loving and caring people, rushed to my side. Minutes later, as I sat in the front of the ambulance sobbing and calling out to him that I was there, I could not help but cover my ears to drown out his cries to God for help. I remember thinking that this must truly be earth’s last day. And, although it wasn’t, it certainly was the end of life as we knew it. Our world was forever changed on that unusually cloudy Tucson afternoon. Forever changed. Schizophrenia does not come for a visit. It comes to stay.
Although I am an extremely educated and well-read individual, I had never grasped the true picture of Schizophrenia and its many related disorders. Doctors and psychologists had continually steered me in other directions. As Sky weathered that first episode and hospital stay, I devoured every book I could find pertaining to Schizophrenia and adolescent psychosis. I would cry for hours, consumed by internet stories written by parents of schizophrenic children. Many of these children, as they neared adulthood, often chose suicide rather than struggle to function in our judgmental society. My son chose then and continues to choose now to fight these Voices every single day. But it is never easy. At the age of eleven, he could only describe his inner experience by saying, “I feel like I am haunted.’
In October of 2001, we were suddenly given a reprieve. For one entire year, beginning after Halloween and lasting throughout 2002, Sky was actually symptom-free. The Doctors called this a “remission”. For myself, I will forever feel my own “haunting” about that year because, as hard as I try to remember the details, I simply can not. I only know that, yes, it happened. Although we were continuing the meds, I truly thought the worst was over. I let the Voices become a memory and so did my son. When the Voices returned – again with subtle warning signs three weeks prior that we both chose to ignore – it was final and for good. Again, horrible pangs of guilt. Did we laugh enough the year that he was feeling good? Was he happy? Was I a good mother that year? Did I yell too much? Did I say “I love you” enough? What if I had known that the Voices would return with all their bags packed? Knowing the Voices would be returning Is not unlike knowing your child has but one year to live. What would I have done differently? What would any of us have done? As much as I try to make sense of it, I suppose it does not matter. Sadly enough, I just can not remember a time when the Voices were silent.
Now, five years after the initial shock and indescribable sadness, I feel ready to tell my son’s story. I was so consumed with my own suffering at watching his suffering, that when it dawned on me, just a year ago, that this young person had quietly developed, on his own, incredible coping skills drawn solely out of his unwavering desire to live, I decided it was time to share this ongoing experience with everyone. Sky found forms of peace long before I did. My relief came, however slowly, from reading through the dusty Zen Philosophy books I had been collecting and ignoring for years. Once I pulled the first one from the shelf, dusted off the soft pages, and began to read, I felt I had finally found something to fall back on – a simple, logical, calming little belief practice that has helped me even if only for a moment here and there:
“The only thing that matters is the here and now – this very moment and
not what happened yesterday or what might happen tomorrow.
Our lives at this moment are just as they should be.
Good or bad,this moment of our life is what it is.
Our awareness, mindfulness and gratitude are lost when we let allow
our emotions and thoughts spin us out of control.
If we learn to simply label, as merely thoughts, our anxieties and anger as they arise
and then let them go, we can feel peaceful, not overwhelmed, by the tasks needed of the
moment. We can get through this life.”
Sky is sixteen now. We have survived four relapses, four hospital stays, six or seven different medications, and several useless psychologists. The primary Doctor who prescribes his medications is kind and caring, respects my opinion always, and is continually amazed at Sky’s ability to cope. She listens to him. He is so informed about his illness that he has educated all of us. There are no medications that stop these “positive” symptoms for my son. In the very worst cases of this disease, especially when it begins at an early age, this will unfortunately happen. He is aware that he has become paranoid. He often experiences visual hallucinations of the most horrific kind and has to distinguish the reality from the psychosis as he goes about his day. He has figured out a way to know, at the moment it is happening, what is real and what is not. He has an unwavering determination to live even when the suffering has been, and often still is, unbearable.
While I understand that Schizophrenia is a progressive disease, I can proudly say that my son, himself, is getting better. His method of living in the moment and still finding a reason every day to laugh no matter what his brain is urging him to do, make him the most Zen-like person I probably will ever know. After everything he has been through and continues to experience, he is still the kindest, most caring teenager I have ever known. Even on his darkest days, he will find a reason for a laugh or a smile. For several years after that first day, I could not fathom how he could continue to find the will to live amidst the suffering in his brain. Fear of his suicide tormented my days. If he did not answer the phone after school, I would race from work with my heart pounding inside my chest, only to find him using his favorite “weapon” against the Voices – his headphones and his music. I can not count how many times this has happened over the years. To this day, all the sharp knives are packed away (heck, who needs them anyway?) Two years ago, on a very bad day, as we lay on his bed trying to decide if a hospital stay was necessary (the periods we call a “relapse”), I made him promise that he would never give up and I promised to him the same. To this very day, when one or both of us seems overwhelmed with life, we are quick to hold each other to that promise we made.
Sky continues to have goals. He’s determined to work, longs to be an EMT, and plans for the future. He is a wonderful and safe pilot, having accumulated over 8 hours in actual flight time. He wants to drive. He is a law-abiding (to a fault!) citizen. He worries about everyone’s health – my parents, our friends, his father, and especially me. He never utters a “swear” word, although the Voices bombard him with the “F” word day and night and, well, his mom tends to run her mouth without thinking. He does not and will never do street drugs. I know it. Everyone who knows him knows it. He is honest to a fault. He is smart and witty and makes me laugh every day with his adult-like sense of humor.
Sky gets life. He really, truly gets it. He experiences the worst, he appreciates the little things, and he knows that life is sometimes so bad that it’s funny. He gets it. And we tell each other many, many times a day – even as we pass down the hall, even as we are doing different things on different sides of the house – the three most important words two people can ever say to each other and mean – “I love you”. Yes, of course he makes me crazy sometimes, and his eccentricities and obsessions often totally annoy me, and it’s frustrating to not always be comfortable with doing the “normal” things families do, and this whole experience had driven me to attacks of anxiety and a prescription for Xanax. But Sky is Sky. And I am me. And when we laugh about how others must see us, we call ourselves “that psycho kid and his crazy mother”. My job in this life is to stay educated, keep working my butt off, and see Sky Ballard through his life, making damn sure that as long as he keeps that amazing grip on reality – the very thing that The Voices of Schizophrenia feed upon – he will be awarded all the opportunities that this fragile world has to offer. Words can not express how proud I am of his strength and determination. When I crumble, he still stands. In the midst of a relapse, when I can not bear to watch my child suffer one more second, he will comfort me. Thank you, God. I am so lucky.
As I was typing just now, Sky walked into the room and asked me calmly, “Do you think there will ever be a time in my life when the Voices will be gone? Like when I’m a Fireman or a Policeman or will they just go on until I am an old man?” He wasn’t asking out of exasperation or frustration or because he felt sad. He was asking because he wanted an honest answer, whatever that may be. I stopped for a moment, thought about his question, and then said, “Well, I don’t know. I really don’t know. I wish I did. I’ve read that sometimes they go away as you get older. I’ve read that as you fix situations in your life and deal with things they subside at least. And there is always the possibility that they’ll come up with a new med that’ll finally put an end to it. I wish I knew, Bud.” And with that answered, he took his Pepsi, said “I love you, Mom” and left the room to go back and laugh at Will Smith on his favorite sitcom. And not just “laugh” – I mean, howl in amusement right from his belly.
That, my friends, is why my son is the bravest and most amazing person I have ever known.
