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.

Sunday, March 12, 2017


I do not know what it is about cataclysmic weather events and Nick's health emergencies but it is more than a little unusual how often we journey to Children's amidst hurricane force winds and blinding snow storms.

Is this yet another meteorological metaphor?

Or is this something else?

Long time readers may remember our visit to Children's during the height of Hurricane Sandy?

Once again, we are headed to Boston.

And once again, extreme weather conditions are expected.

Nick is scheduled to have his procedure at 7 am and should be in recovery by afternoon.

The following morning, Tuesday a blizzard warning is in effect.

Traveling will be too treacherous for Pete and Weston to come back to visit with us.

There will be bare bones staffing and few new admissions.

Hopefully, we will not lose power, although I am sure they have some kind of kick-ass generator capability.

This should be an interesting adventure....I will keep you all posted.

As an added interesting note,

We met with Nick's surgical resident on Monday.

"Do you have a lot of physician's notes to read about Nick?" I asked her.

"I guess you could say that," she answered.

"Really, how many," I asked.

"649," she answered, straight-faced and serious.

"You're kidding!"

"No," she replied. "That's what 15 years of complex medical care looks like."


p.s........do you think I've earned an honorary medical degree by now?

I think I will ask her.