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.

Saturday, November 1, 2014

Shake-Up Call

Sometimes I forget.

I become so focused on including my son in his class activities, on empowering him to be a part of his world and enabling him to be a child like any other, that I forget.

I forget that he is not.

He likes to remind me of this fact in rather spectacular fashion.

Yesterday, we had an appointment scheduled with Nick's ortho, an important visit to have him fitted for his new Franklin shell and magic shoes.

This ortho, however, is a very popular guy. His wait time can be as long as 4 - 6 months.....time enough for Nick's ex-rays to become out-dated especially since we started him on growth hormone therapy. Needless to say, we do not ever reschedule appointments with our good friend, John Wall.

This morning however, Nicholas woke up feeling lethargic and slow. He was not acting like his typical happy self.

Once again, I am faced with a difficult decision.

Do I persuade my medically complex child to push through his weariness so we do not miss this important appointment, obtaining the critical devices that help straighten his spine and soothe his feet?


Do I cancel the appointment, allow my son to rest and forgo obtaining these important tools for another 4 - 6 months?

Since Nicholas does not seem feverish.....only tired, I decide to risk it. I push our luck and dress him warmly for our visit with John.

John is happy to see the now very-tall Nicholas, he greeted us with his usual enthusiasm, a familiarity that builds over the many years of brace fittings and spinal examinations.

Nicholas is quiet and unusually passive during the exam. Absent is his typical hysteria over pants being pulled down too low or too much standing. He moves like a robot, passively obeying commands and moving with no enthusiasm or comment.

I know something is wrong.

His cheeks start to flush and he asks to lay down on the examining table.

Now I know, he is in trouble.

When you are the parent of child who is medically complex, medical crisis can occur in the snap of your fingers. It does not take long for your child to go from feeling slightly unwell to being in a full blown, in-your-face, holy shit medical crisis. A simple virus to others can become a life threatening event for Nicholas.

You may recall one of our crisis expeditions to Children's Hospital in Boston during the height of Hurricane Sandy.

I will never get used to this feeling.

It scares the crap out of me every time I face it.

I quickly thank John for his services and hurry the lethargic lad into the car.

Nick is unusually quiet and sleepy. I consider driving him immediately to the nearest emergency room. My heart drops like a heavy stone from my chest into my stomach.

Nick complains that his stomach hurts.

I drive at break neck speed to get him home.

Thankfully, Pete is home in case we need to transport Nick to the hospital.

We ask Nick how he is feeling but instead of answering, he asks if he can go to bed. This remember, is a child diagnosed with PWS, someone who possesses and unusually high tolerance for pain. He has not asked for dinner or his favorite dessert.

We put the tired tot to bed immediately.

I put on my pj's and take up my post beside his bed.

It is going to be a long night.

He sleeps restlessly and gets up often to go to the bathroom.

But he awoke the next morning feeling a little bit better.

He rested and spent much of his time in the bathroom.

He did not tell me that he was hungry......not even once and for the first time in my life, I was disappointed not to hear those terrible words.

An awful reminder that I have endured yet another Nicholas shake-up call.