Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, September 14, 2010

I'm No Expert

I am not an expert at anything.

I am not a fine-tuned athlete with golden trophies lined on a shelf in my living room. Music and art are like foreign languages to me. I am not a banker, a lawyer or a CEO. I have trouble just balancing my checkbook. So when my son Nicholas was born with Prader Willi Syndrome, I found myself completely unprepared for the job.

Via: Weblo.com
Physicians from Children's Hospital handed me my new born infant amidst a flurry of complex medical terms. Words like hyperphasia, scoliosis and cryptochidism were thrown at me like icy snowballs hurled from some anonymous attacker. Geneticists and endocrinologists surrounded my bedside like nervous advisers briefing the President on the latest global crisis. Critical medical decisions were now presented to me for immediate answer. Did I want my son to have a tube placed in his nose or stomach? Do I want to consider giving my son daily growth hormone injections? Here is your list of upcoming doctor appointments.

My role in life was now clearly defined and my son's precious life depended on it.

My easygoing life was officially over, Treading water was no longer an option. A clear life's purpose with devastating consequences had been thrust upon me. It was almost as if since I had not bothered to define who I was, God decided to do it for me. And while I wasn't wearing red spandex tights and leaping tall buildings in a single bound, I suddenly realized that like it or not, I had become a superhero.

Via: Tensionbreaker.com
Suddenly, I could relate to the hardships of the likes of Peter Parker, Clark Kent and Bruce Wayne. These colorful cartoon caricatures now held the key to my success as a parent of a child with special needs. Like them, my identity was cleverly concealed beneath the disguise of a mild mannered stay-at-home mom. As a fledgling caped crusader my new responsibilities of protecting and advocating for my son felt uncomfortable, awkward even overwhelming. I was reluctant to use these powerful abilities and fine-tune them into the superhero skills necessary for defeating the most fearsome of foes. And although the future of the world did not rest in my hands, the quality of life for my child most certainly did.

My superhero powers are more impressive than just slinging a few spider webs or running faster than a train.

I can thread a feeding tube faster than a speeding bullet.

I understand a slew of important acronyms like IEP, AFO, ABA, GH, UPD, CoQ10, IGF-1, BP-3 FISH and MEM.

I can recall all 11 names and phone numbers of all 11 specialists we see at Children's Hospital.

I am able to comprehend complex medical terms in a single doctor's visit.

I am capable of negotiating the harrowing halls of the parking garage at Children's Hospital in Boston.

Wielding my magic PWS Medical Alert Booklet, I have singlehandedly educated countless ER doctors, dentists, anesthesiologists, primary care physicians and nurse practitioners on all the medical complexities of PWS.

I can calculate the number of calories in a lunchtime meal faster than you can say: Pass the butter please.

I can divert a full-blown temper tantrum just by singing a song or asking a question.

I wear an invisible force field perfectly designed to repel thoughtless comments and ignorant remarks like, "I think I have PWS", "It could be worse", or "Just a snack won't hurt."

I have a monthly schedule of appointments that rivals the Secretary of State.

I can lock a cabinet faster than you can say, who was the dope that lest it unlocked?

I spend more time speaking to therapists, teachers, physicians and psychiatrists than I do speaking with my own family members.

I can design an IEP that reads like an owner's manual.

I can activate my superhero laptop, and like the bat phone to the commissioner's office, I can instantly connect with fellow superheroes from around the world who share the same evil arch enemy as me.

Like the lone superhero misunderstood by the world, I too feel  sense of loneliness that comes from living a life few can understand. I too feel unappreciated for the mentally and physically exhausting role I play in saving a life.

When my son Nicholas was first diagnosed with PWS, I wondered how the world would change his life. What I never realized, was just how much his diagnosis would change mine. And while I don't have shiny blue black hair and ride in the bat mobile, I have come to realize that like my superhero comrades, perhaps by embracing my new persona and using it to spread awareness and hope for my children, the world will become a better place.