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.

Thursday, December 17, 2015

Absurdity and a Broken Foot

"The absurd hero's refusal to hope becomes his singular ability to live in the present with passion"
-Albert Camus

Things have been a little hectic at the Peters household.

Would you expect anything less from us?

Our latest adventure?

The kind-hearted Nicholas has broken his foot.

He stumbled on the last few steps of our stairs and twisted his ankle, coming down hard on the right side of his foot, landing with a very loud BOOM!

He hobbled over to a chair in the living room, embarrassed and wincing in pain.

Children diagnosed with PWS do not feel pain, the sensation is diminished. Since he was hollering that it hurt, I knew something was wrong. I pleaded with my sobbing son and asked if I could please take a look at his foot. After a lengthy and very tearful negotiation, he agreed.

I tried to keep a straight face as I observed a very unnatural swelling.

It looked like he had broken a bone.

Luckily, Pete had just walked in the door from work. I told him not to get too comfortable as it appeared we needed to transport our youngest son to the hospital.

Welcome to our world.

The question was:

Do we travel into Boston during the height of rush hour traffic?

Or do we visit a local hospital for an x-ray?

More of those nasty decisions.

We both agreed to keep it simple and head to the nearest pediatric hospital to see if, in fact, his foot was broken.

We arrived at the hospital where luckily, the waiting room was empty. We were directed to the x-ray room and greeted by a pleasant, young attendant who took several pictures of the brave boy's foot.

We were whisked back to the ER room.
The physician called us into her office and told us that Nick's foot was indeed broken.
In fact, he had torn off a small piece of bone.

She explained that they couldn't cast it until he was evaluated by a pediatric orthopedic surgeon. Since there was an unattached piece of bone floating in his foot, she told us there was a good chance he may need surgery to remove or "pin" the bone back together. She fit Nick with a temporary Velcro-type cast and referred us to a local specialist.

On the drive home, Pete and I decided that we would call Children's Hospital in Boston to decide how to move forward in treating Nick's injury.

But in true Lisa Train fashion, as we made our way back to the home-front, our not-so-trusty vehicle began to lose power.

The dashboard lights began to dim, the headlights shut off and the engine began to sputter. Pete guided the wounded vehicle off the road and safely into the service station that was situated directly in front of us.

The garage staff was mostly muscled and male and dressed in grease-covered blues. Luckily for us, these mighty mechanics took pity on us and seemed genuinely concerned about our ailing son and unusual predicament. Their stoic and intimidating demeanor melted away like butter as these gruff-looking bulldogs transformed into playful pussycats. They sprung into action, kindly arranging for our transportation home and agreeing to have our vehicle fixed by the very next day.

We were amazed by our good fortune as these guardian angels in disguise seemed as if they were strategically placed on our path to provide us with assistance. We did not even need a tow since our vehicle died as we entered their parking lot. We realized at that moment that we had made the right decision not traveling to Boston. Can you imagine stalling on the expressway into the city?


Anyway, the next day I called Children's Hospital but without a vehicle to get there, Nick's visit would have to wait. The ortho staff decided to place him on the surgery list for the following morning so the specialist could review the x-rays and operate if necessary.

They explained that Nicholas would need to fast over night. But for a child hard-wired to eat, fasting is nothing short of a torturous request. After the trauma and pain he had already endured; he would now need to withstand more difficulty.

But in true Nicholas fashion, he soldiered on.

Without complaint.

We awoke at 12 am to give him his breakfast so he would not feel deprived of food, a little trick we learned from previous surgeries. At 5:30 am our entire family loaded into our newly-repaired vehicle and arrived in Boston by seven o'clock.

In the orthopedic unit, we were met by an eager young intern who observed the x-ray film and like the ER doc before him, suggested that we prepare for surgery. He told us the surgeon would be in shortly to advise us.

We waited on pins and needles.

At long last, a bespectacled and disheveled doctor fluttered into the exam room.

He explained that Nick would not need surgery.

He was certain however that Nick could not tolerate crutches and a cast and instead suggested he be fit for an ankle support device. He explained that it was a convoluted contraption designed out of laces, Velcro and straps but it would be very effective in immobilizing his foot and allowing it to heal. He said he was confident Nick's foot would heal nicely and we did not need to return.

Pete and I let out our breaths and laughed at the absurdity of our life.

Despite "the doc's" diagnosis, I was thankful that we have an appointment in a few months with Nick's regular orthopedic surgeon, who just so happened to be on vacation this week.

And as for Nicholas?

He was genuinely happy.

Unaffected by the chaos.

Thinking instead about what he was going to eat for breakfast.

"I draw from the Absurd three consequences: my revolt, my liberty, my passion."
-Albert Camus