“In order to understand the world, one has to turn away from it on occasion.” ~Albert Camus
There are times in ones life that the weight of our burdens become so astoundingly complex, so crushingly painful, that you need to take a step or two back away from friends, family, society, the world itself. There are those times in each of our lives that darkness quickly closes in. To recapture the strength that lies temporarily dormant within ourselves, and climb out from the depths of our sorrow, for some, isolation in a sense, becomes a sanctuary.
There are individuals in this world who in times of need and desperation can emerge from their shell, ask for help, share their troubles, and lean into the love and support of others without hesitation. They have the innate ability to ride the waves of chaos and insanity of life in such a way that it’s admirable. I…am not one of those people. I myself stand in the center of the first paragraph, in which I shy away from the world temporarily in an effort to reboot (so to speak), and then come out swinging.
That’s not to say that I just close the door completely and slink away from society into a self-deprecating love fest. No, not at all. What I have found, which surprised even myself, was that I don’t lean into the arms of others for support. I don’t make the phone calls, write the emails, write on my blog, or even write in my journal about how exceedingly unbearable my life has become at any given moment. I do make the occasional note of frustration on FaceBook when I feel there may be a moment in which I might realistically grope my head, dig my fingers in, and pull each tiny follicle from my tender scalp. Otherwise, I emotionally recoil into myself, paste a smile on my face and maneuver through each day as though life is a splendid delicacy waiting to be savored. In truth, behind the smile, the lighthearted laughter, and quick witted banter, is a soul slowly withering in the darkness, trying to figure out a way to live with some sense of normalcy. Trying to determine if, how, and when I could pull my child from the thick recesses of his twisted sense of reality and downward spiral of increasingly violent and dangerous thought distortion.
That, in a nutshell, is where I’ve been since a few short months before the holidays. The holidays, which at one time, represented the more jubilant moments of our existence have now turned into a time of stress, dread, and frustration for our entire family over the years. For my son, the holidays are a time of immense anxiety which then morphs into a time of anger, rage and a complete lack of impulse control. While most parents are running around trying to find the perfect gift and looking forward to a day filled with love, family, and the joy of smiling faces as little ones open their presents. My husband and I were walking on eggshells, quickly purchasing gifts we knew would keep our son occupied long enough that we could have a few days of respite. A few days in which we were not being screamed at, insulted, having our home turned upside down, or making trips to the ER. Our only Christmas wish was to have a day of peace, a day in which the pandemonium that had become the norm in our increasingly uncivilized lives would just take a f***ing break and let us have one normal quiet day that we could actually enjoy. It never happened, but one could still wish, right?
What happened in those months of solitude, inner reflection, and weeks of research, phone calls, and whispered prayers in the quiet nightfall, came a glimmer, just a small ray of hope in the midst of our chaotic lives. In the days following my son’s second diagnosis of schizophrenia and his inability to function in a mainstream special education classroom which caused him to (thankfully), be moved to day treatment, (a move the school he was in was against, but as an avid advocate of my child, it was a move I was giving them no other choice but to make). During that extremely arduous time in our lives I was able to connect with NIMH (National Institute of Mental Health), at the NIH campus in Bethesda, Maryland. I filled them in on our situation and they asked for all of his medical files from the last five years. I quickly sent them in and had all consent forms signed and faxed so they could communicate with his past and present doctors, teachers, and therapists. As days turned into weeks and weeks into months, we finally got the call that allowed us to breath for the first time in years.
NIMH was interested in meeting with our family and doing an intake with us. They wanted to fly us out all expenses paid and spend a few days evaluating my son. If they felt he could possibly have Childhood Onset Schizophrenia they would then invite us to be a part of a trial at their NIH clinic for 2-4 months. My son would live at the hospital and be under constant care and I would stay at the Inn on campus. We had our intake on January 15th and have been here at NIH ever since. I can’t begin to express the astounding amount of care that my son is receiving. For the first time in the seven years that we have been grappling with the devastating circumstances of our son’s illness and the destructive and heartbreaking manifestation of his symptoms, we finally have reason to hope.
During the months of isolation and discord there were times in which I felt as if small parts of who I once was, were slowly dying. Each day I was mourning and grieving for the child I loved, the once vibrant, carefree boy who filled my days with joy, I now barely recognized. Instead of expressing his love of me, he expressed his wish that my death may come and threatened daily, weekly, to slash my throat. I felt at times, that this was it, this was the life I was given and it was a life at some point I should just succumb to. The thing is though, I’m a fighter. I always have been, I’ve always had to be. My life has never been easy and the road to which I have traveled has been fraught with loss, heartache, turmoil and unavoidable negative circumstances that were no fault of my own. Along that road I never detoured, I never gave up, and I always continued to move forward. Knowing my son has been unable to fight for himself, I knew I needed to fight for him, as parents, it is our responsibility. More than that, I love my children, I love my son, and have no plans on deserting him or giving up on him. There are times you must turn from the world and find yourself, but you must always turn back and face what you’ve been shielding your heart from.
NIMH has given my family something I thought we might never know again. It has given my son a safe place to reside where they are working diligently each day to determine what exactly is causing my child’s symptoms. They have been thoughtful, kind, uplifting, and their assessments thus far are intelligent and educated, never forced, rushed, or contrived. They have given my husband and I much needed respite. For the first time in so many years I can ramble through a day stress free and we have even had a few date nights. The staff at the Children’s Inn, and their volunteers have been amazingly kind. We have had the great privilege to meet and befriend extraordinary individuals who each day are fighting to save their own lives as they battle cancer and other devastating illnesses. Meeting these very young exceptional people has really helped us to put our own situation into perspective. To watch these kids fight with such courage and grace reminds me what a blessing each day is, no matter what your circumstances.
As we move into phase two of my son’s treatment I wait anxiously for a diagnosis. They have said they don’t see or feel that it is schizophrenia, but the next few weeks will tell them more. No matter what his diagnosis is, the only thing that really matters is that he is my son, and I will love him no matter the outcome and I will never give up on him or my daughter. I encourage any parent who is fighting to help a child with a serious mental illness or autism, to contact NIH/NIMH and see if they have a research program that could be beneficial for your child. http://www.nih.gov/health/clinicaltrials/findingatrial.htm
In the months to come I will post more frequently about the care and outcome of my son and my families journey here at NIH. If I can help anyone with questions regarding treatment here, please feel free to contact me.
“Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all” ~ Emily Dickenson