I am not an expert at anything.
I am not a fine-tuned athlete with golden trophies lined on a shelf in the 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.
Physician's from Children's Hospital handed me my tiny infant amidst a flurry of complex medical terms. Words like hyperphasia, hypotonia and cryptochidism were thrown at me like icy snowballs thrown from some anonymous attacker. Geneticists and endocrinologists surrounded my bedside like nervous advisors 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 child 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.
Suddenly I could relate to the hardships of the likes of Clark Kent, Peter Parker 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 as a superhero was cleverly concealed beneath the disguise of a mild mannered stay-at-home mom. As a fledgling caped crusader, my new responsibilities of fighting and advocating for my son felt uncomfortable, awkward even overwhelming. I was reluctant to utilize these powerful new abilities and fine-tune them into the superhero skills needed 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 even more impressive than slinging a few spider webs or running faster than a train.
I can thread a feeding tube faster than a speeding bullet.
I understand 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 understand complex medical terms in a single doctor's visit.
I am able to negotiate, with my eyes closed, the harrowing halls of the parking garage at Children's Hospital in Boston.
Wielding my magic PWS Medical Alert Booklet, I have single-handedly educated countless ER doctors, dentists, anesthesiologists, primary care physicians and nurse practitioners on all the medical complexities of Prader Willi Syndrome.
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 spend more time speaking to teachers, therapists, 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 a 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 Prader Willi Syndrome, 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.
Lisa Peters is superhero mom to Weston 11 and Nicholas 8 and wife to Jeffrey. To read more about their adventures fighting the diabolical forces of Prader Willi Syndrome and ADHD, visit them at their newly created blog: On a Life Less Perfect at http://www.onalifelessperfect.blogspot.com. Same bat time. Same bat channel.
To learn more about Prader Willi Syndrome please visit: http://www.pwsausa.org.
I love this post Lisa! I think we can all relate to often feeling that we simply don't have the capability to do this "gig" -- but do it we must.ReplyDelete
Are you familiar with Mary, whose son Oscar has PWS? Mary has a wonderful blog. Unfortunately, I can't pinpoint it right now, but I'm sure someone on this list knows it.
Thanks so much for sharnig!
I'm such a dodo -- if only I'd read down as Mary has in fact written the post before yours. Her blog:ReplyDelete
Fantastic post Lisa! You really nailed what it's like to be the mom of a kid with PWS -- I can relate to every single word you wrote. Great to see you here and I'll be sure to check out your blog!ReplyDelete
Lisa, you are amazing. You can calculate the number of calories in a lunchtime meal? Good Lord, if I could do that maybe it would help me lose weight LOL.ReplyDelete
My son fortunately doesn't have to count calories. He could probably use some extra ones though because he's so thin. It seems kids with cerebral palsy have a metabolism that's through the roof!
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