I am a wife and a mother of two beautiful kids in their teens. I have an amazing husband and I have done work throughout my life that has been challenging and rewarding. Most of that work has been with individuals living with mental illness and developmental disabilities. In my life I have had personal experience with these challenges as well. I have battled social anxiety, post partum depression, thoughts of suicide (brought on by a reaction to a cancer medication) and generalized anxiety disorder. I have often asked, even challenged God, why me? Of course then I feel guilty, as others have faced greater hurdles, greater losses.
However I have come to believe that each of these experiences has been a gift. Each has brought new feelings of empathy, new knowledge, new understanding. Each has been like receiving a piece of battle armor for the war to come. And boy did that war come.
I was in a pretty good place, having won a fight with breast cancer. I'd found a new job and a new sense of purpose. My family was by my side and going strong. In fact, my daughter was just starting ninth grade at a great Catholic girls' school and was in love with her Studio in Art class. Let me tell you a little about my daughter. She is brilliant, funny, passionate, shy, a fantastic artist and musician and has an amazing imagination. She was never one to follow the crowd, likes what she likes, and always had a small but intimate circle of friends. At this time she had learned to draw and paint on her computer via a Wacom art tablet, and could post her art online. In fact, she'd been doing this since eighth grade and it had become a powerful drive, consuming much of her time. She adored drawing Anime characters, inventing her own as well as drawing established characters, and got feedback on her art through posts on her page. I had no idea how any of this worked, but she seemed to really enjoy it and I thought it was great that she could interact with other artists and fans around the world.
What does this have to do with anything, you ask? It is a preface, with foreshadowing that I completely missed. As my child became more involved with her art online, she became more withdrawn. Her style of dress changed, her attitude changed. My son says it started in eighth grade, but I was in the midst of my cancer battle and...I missed it. She had no interest in socializing with her friends, had trouble making new ones once she was into the first couple months of ninth grade. She had trouble focusing and started having panic attacks at school. Oh no, I thought, she is struggling with social anxiety-that has to be it.
We got her linked with a psychologist. However, new symptoms began to crop up. She had difficulty swallowing, she lost weight. We took her to a GI specialist. We started medications, tests...She was missing more and more school, falling behind. Her anxiety was increasing, her guidance counselor was calling me a couple of times a week, it seemed, needing me to pick her up due to stress and stomach issues, due to odd behavior-freaking out in an assembly, completely anxious and paranoid.
I could go on...but let's cut to the heart of it. I pulled my child out of school, convinced she was having a "break down" and that getting away from school stress would help her get herself together. But then came the day we sat in her therapist's office, my husband and I, after my daughter's session. And we were told that my daughter was hearing voices: cruel, mocking voices telling her to hurt herself, hurt us. Voices that taunted her wherever she went. And she was having hallucinations, both visual and auditory, of angels that came to her room at night and sang to her. These angels were kind. But she also felt "bugs" crawling under her skin that the cruel voices told her she needed to scratch out, cut out. The cruel voices told her that food was poisoned. Finally, she believed that she, herself, was an angel trapped in a human body and wanted to go "home."
Oh my God. Oh my God.
She needed to be seen by a psychiatrist, the counselor said. She was experiencing psychosis, the counselor said. She should probably be hospitalized, for her safety and yours, the counselor said.
Oh my God, not my baby, please, not my baby.
We were in shock, terrified, in denial of just how severe this illness was. I had visited clients in mental hospitals, I had stayed for an observation period, myself, when I'd had suicidal thoughts. There was no way I was sending my child to one of those places. We would find an outpatient psychiatrist!
Well, thank God my daughter's therapist gave us her cell phone number. We called her at 11pm two nights later when, in spite of all our precautions, my daughter found a pair of scissors and tried to "cut the bugs out". She came downstairs, having already bandaged her arm, and apologized, of all things. Her doctor called ahead to ECMC children's psychiatric emergency room. About 18 hours later she was admitted.
WHYWHYWHYWHY...
Why do these things happen? Why do children become afflicted with schizophrenia at age 14 with no family history...Why are children raped, murdered, abused, suffering with cancer, starving...
Let me tell you, there is no point at all in asking why. There is never an answer that will satisfy you. The ONLY thing you can do is be open to God's gifts, His winks, those moments that give you strength for the journey.
That night, and many nights thereafter, I was a complete wreck inside. But...I had been to ECMC many times for my job, and once for my life. The doctor on the unit that night was the same doctor who treated me two years before, and also happened to be a colleague of my brother's. I knew the system, knew the terminology, knew what to ask for, knew to question everything and remain vigilant. Because I had been though it. Why? I believe that all this had led me to the strength to be there for my child, to help my child. A gift, armor for the war.
There have been peaks and valleys in the almost three years since that night. Trial and error and trial and error. But there have been many God moments, many gifts. My daughter has had three hospitalizations and one extended stay at Western New York Children's Psychiatric Center in West Seneca to start her on a drug that has brought her back to us in many ways. A drug I first learned of in my job 25 years ago. It is a miracle for many patients, but it is strictly monitored for serious side effects - and I'm not sure we would have gone through the process if I hadn't seen it in action all those years before. Thank you, God. My daughter has been attending a Day Treatment school program which allows her to take regular school classes in a small environment with knowledgeable teachers and psychiatric treatment right on site. It generally has a long waitlist. When we realized, though trial and error that this program was what she needed, and called the school district, we were told there was an opening and the district jumped right on it to get her in. Thank you, God.
Throughout this journey, and a journey it has been, especially for my amazingly brave and resilient child, but for our whole family, really - well, there have been many emotions, both difficult and good. First, the difficult. I find myself, many times, grieving for the girl she was, the girl she could have been. I hate seeing pictures of friends' children on Facebook, comparing their normal lives and normal activities to my child's experiences. And I feel anger, I feel cheated that my daughter may never go to a prom, or drive a car ( she's terrified of that right now), or give me grandchildren that are biologically ours. I am depressed at times, and anxious, always waiting for the next bad thing to come around. But, you know, it is okay to have these feelings, to wade and wallow in them for a while. Then, I have to climb up and out.
Then I look at the pictures of my friends' children on Facebook and I am truly happy to see them. I marvel at how they've grown, celebrate their milestones. Because they are beautiful, and I love my friends. I celebrate the unique, lovely, and loving people that my children are becoming. I feel gratitude, love and appreciation for my husband, my equal partner and rock through all the twists and turns of this journey. I am filled with gratitude for our parents and siblings who have stood by us with love and acceptance. I have a new appreciation and respect for mental health workers of all kinds, doing their best in a system that has been neglected and cut to the bone by our government. Living on this side of the system, I know without a doubt that these people have helped to save my child's life.
The girl my daughter is right now - well, she is pretty amazing. She is driven to learn and unafraid to search for and use the resources she needs to acquire a new skill. For example, she found online tutorials and music and taught herself to play the ukulele and now she plays and sings every day. She draws all the time, she's never without a sketchbook at her side and she is so good! She taught herself water color painting, and creates truly beautiful works of art. She wants to go to college to be an animator or graphic novelist, and I believe she will do it. She loves, and is loved, by all who meet her. Yes, she struggles, yes, she progresses and regresses. She may never be truly whole again. But she will be someone beautiful. And that is a gift from God.