Tag Archives: FG Syndrome

My Favorite Superhero

My son Justin was born with FG Syndrome, a rare genetic disorder linked to the X chromosome that affects him physically, emotionally, neurologically and intellectually. His syndrome has in no way stopped him from blooming into a remarkable and independent young man with a heart of gold, a wonderful sense of humor, and a deep sense of compassion for both humans and animals. He is the defender of the underdog. He is my role-model for unconditional love. He is my favorite Superhero…

©Tracy J. Thomas, 2012. All rights reserved.

©Tracy J. Thomas, 2012. All rights reserved.

©Tracy J. Thomas, 2012. All rights reserved.

©Tracy J. Thomas, 2012. All rights reserved.

©Tracy J. Thomas, 2012. All rights reserved.

©Tracy J. Thomas, 2012. All rights reserved.

[**All photos shot and edited on my iPhone4**)

Loves Little Lessons


©Tracy J. Thomas, 2010

Photo: Justin with Peace the Dove.

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 around them.  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 as I held him in my arms at a year old.  He had an inability to filter sound in a crowded room and a desire to flee when he felt overwhelmed.  His delay in speech and poor gross motor skills increased as he grew.  He had a need to repeat sentences and questions multiple times and his hand washing compulsion often made them bleed.  With Justin eye contact was rare and his attention span was 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 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 wanton of no other.  He has taught me about loves 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.