Last week, I traveled to Children's Hospital alone.
The results of Nicholas's Neuropsych testing were complete. Dr. Boyer requested to speak with me alone so she could review her findings with me in private.
I head off to the hospital, minus my faithful companion, Nicholas. The car ride is unusually quiet. There is no singing coming from the backseat as I fight my way through Boston traffic. I take a deep breath and remind myself that the results of this testing are not important, but still I am anxious.
I park in the hospital garage. The silence now almost deafening as I miss Nicholas's laughter when he sees the coveted garage. There is no little voice to announce,
"Mummy, we made it! We're in the garage!"
I walk alone through the hospital until finally I reach Dr Boyer's office.
As I check in at the front desk, I am confused. Do I give the attendant my name or Nicholas's? I decide to give her both. The young woman smiles, but I am still anxious and wonder, inappropriately of course, if she knows something that I do not. I am dreading this meeting.
I sit in the waiting room and see the tiny, "Dora the Explorer" table and chair set where Nicholas loves to play. I feel alone and vulnerable. I miss Nicholas's calm, happy spirit, his loving and healing energy. I miss his angelic face. I hold back my tears.
"Mrs. Peters?" I hear, as Dr Boyer approaches me to shake my hand.
This is it. I think to myself and take a deep breath.......it doesn't matter, it doesn't matter....I repeat inside my head trying to gather my strength to face the awful words I know I am going to hear.
Dr Boyer seems nervous. On her face, her most professional demeanor and suddenly I realize that she too is struggling to find her inner strength.
She sits at her desk and places Nick's file in front of her. She follows her professional script and begins our meeting by describing Nicholas's strengths. But my thoughts are distracted, I hear only single words,
"Pleasant...talk, talk, talk.....loving.......talk, talk, talk......hard working....." I am struggling to be patient, waiting to hear what I came 30 miles to acknowledge.
And then finally it comes....
"We performed many verbal and abstract tests and they display results that are similar to your parental questionnaire responses."
In other words, she knows that I already know what she is going to say.
"Your son is significantly delayed. I am diagnosing him with mental retardation."
It is a terrible word.
Immediately, disturbing images flood my mind, thoughts of straight jackets, barred windows and dark institutions. Inside my mind, I hear the screams of deranged individuals sentenced to a life of imprisonment. A not so distant reality for many diagnosed with this condition.
It is as if a demon has suddenly materialized inside my brain. He is laughing and sneering. He is running through the halls of my mind, smashing the happy pictures that hang there. And on the floor of my brain, he stomps on the shards of glass and shattered photos of Nicholas smiling and singing. He laughs as he creates a hellish bonfire burning the tiny torn pieces of my dreams for my son. He extinguishes the last fragile shreds of my hope.
It is a word no parent is ever ready to hear.
Parents of children with special needs are prohibited from living in denial.
Any positive outlook you may possess for your child's bright future, is quickly tempered by stark intellectual reality. You are surrounded by professionals who remind you often of your child's handicaps, his issues, his disability. Teachers, therapists, physicians, and psychologists are strategically placed throughout your life to remind you that your child has been diagnosed with a mental illness. They are armed with test results and progress reports. They are persistent and eager to share their unwelcome findings with you. You may disagree with their methods or test results, but it is irrelevant, all that matters is that you listen to their emotionless explanations.
As a parent of a child with special needs you cannot run and hide, you cannot bury your head in the sand, you must listen patiently as yet another professional tries to pigeon hole your child. You must face the cold reality of your child's diagnosis....again and again and again.
These professionals will remind you that academics is no longer the focus of learning for your child. They tell you life skills training is the only hope your child has for a happy future. Any chance of intellectual greatness is gone. Recognition or acclaim in society is only a passing shadow, a parent's delusional dream. Your child is somehow less. He is less smart, less able......less of a human being.
Dr Boyer is speaking, but I do not hear her. Instead, I am distracted by a new vision in my brain, a vision of Nicholas. In my mind's eye he is holding his teddy bear tight to his chest. He is swaying back and forth, comforted by the love he feels for his beloved toy. This vision of Nicholas renews my lost courage and hope. I am awakened. I can finally hear Dr Boyer.
I thank her for her time. I tell her that I am not in denial and understand what steps I must take to ensure my son has a viable future. I tell her that despite this testing, I will insist that we continue to teach my son all that he can learn and that this diagnosis does not give us a license to become complacent about our approach. I tell her that I understand my need to know who will care for my son when I am gone. It is a silent fear that haunts me every day.
I tell her that I appreciate her report but believe it is important to remember that I have hope for my son and his future. That to me, intelligence has never guaranteed happiness. Instead it is a loving heart that brings contentment. It is the ability to think about and truly love others that fulfills a person's soul and makes the world a better place for everyone. Perhaps in time we will find a test to measure this important quality for.... "to love" is truly "to live".
I left Dr Boyer's office feeling somewhat numb and although I felt sad, something kept me calm, something stopped me from crying.
It was time to pick up Nicholas from school. I drove to his school and waited in my usual spot on the benches inside. A few minutes later, Nicholas came around the hallway corner, as he saw me he ran into my arms.
"Mummy," he says, "I had a great day!"
I hug him tight, thankful that I am once again in his calming presence.
"Are you proud of me?" he asks.
I hold him tighter.
"Yes, Nicholas, Mummy will always be proud of you."
And finally, in my son's loving presence, I can no longer hold back my tears.
To read more about our family experiences, please come visit us at: www.onalifelessperfect.blogspot.com To learn more about Prader Willi Syndrome, please visit www.pwsausa.org. To learn more about epilepsy, please visit www.epilepsy.com. Thank you to all of our readers, wishing you all a very healthy and happy New Year.