By: Tracy J. Thomas
Most people dream of having that one perfect child. A child who will grow up to be happy, successful, and have a positive impact on the world and those in it. Possibly even change it for the better. On Valentine’s Day in 1987, my own perfect child came into being. He was a strapping 9-pound, 15-ounce, 23-inch bundle of resonant, wailing joy. There was no doubt this child would have a strong voice. He made that clear from the moment he breached the womb. He was here on a mission and he demanded to be heard.
“Justin” we called him. The name felt strong and with purpose. Like all first time mothers, I struggled to learn the language of my newborn. Tears, exhaustion, frustration, elation, tender moments, and amazement all came with the territory. Though I had read all the recommended books during my pregnancy, there was nothing in print that could have prepared me for the realities of a baby.
From the very beginning Justin existed outside the mold. He did things his own way and in his own time frame. Yet when he did accomplish a milestone he did it with unending determination and delivered it with such glee and jubilation it would melt my heart and assure me everything would be okay.
There were many times in his childhood when I had my doubts. Like the first time he had a Grand Mal seizure at one-year old as I held him in my arms. He had an inability to filter sound in a crowded room and a desire to flee when he felt overwhelmed. As he grew, evidence of his delays in speech and gross motor skills increased. He had a need to repeat sentences and questions multiple times and his compulsion to wash his hands often made them bleed. With Justin, eye contact was rare and his attention span limited.
This accumulation of things that existed outside the “norm” triggered our journey into the world of medical poking and prodding. We paid endless visits to his pediatrician, then were sent on to UCSF for genetic, neurological, and psychological evaluations. After several years of tests and unending question marks, the answer materialized during a trip to the University of Utah Medical Center for evaluation with Geneticist Dr. John Opitz. Justin was finally given the clinical diagnosis of an obscure genetic condition: FG Syndrome.
So, there we had it. My unique, determined, outgoing, beautiful son had acquired a label. A label that opened the doors to specific therapies, specialized services, medications, and adjustments in our approach to his education. But he was still Justin to me. It became apparent he would lead a special life. A life filled with behavioral assistants, special education, occupational therapy, seizure medications and ultimately a job and independent living coach. He would not grow up to be the next President of the United States, an astronaut, or a famous race-car driver. But that was okay with me.
Justin brings his own unique way of being to the world. And he has many lessons to teach. He sees beyond the color of one’s skin, their political party, their religious beliefs, their sexual orientation, and their intelligence quotient. He loves all people as long as they do not exhibit intent to harm. He has a strong sense of justice. He will be the first one to jump in to aid the weaker when they are bullied by someone a bit stronger. Justin always speaks his mind with a raw honesty that few of us can muster. He has a tenderness of soul when he sees someone cry and will always give a warm hug and a kind word to make it better. He talks sweetly to babies, loves animals deeply, and has a belly laugh that is so infectious it could end any war. He should, in my book, win the Nobel Peace Prize.
No, my son will never be a great writer, a physician, or a composer. But he is the most brilliant of teachers. The lessons he has taught me during his 23 years have been some of the greatest lessons of my life. He is, in every way, shape, and form my perfect child. I am wanting of no other. He has taught me about love’s little, yet extraordinary, lessons of life and has colored my world like the most brilliant of rainbows. He is an incredible young man. And I love him.