Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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, November 17, 2016

The Power of Small

I don't know if it's Nick's calm energy
or his gentle spirit
that attracts

small and gentle creatures

by his side.

During a nature walk
at his new school,
a tiny bird sat gently on his hand.

The chickadee comes to those who understand the power of small things.
Small things that we do consistently make great differences.
Something very small can make a big difference in someone else’s life.

I am searching for small.

Monday, November 7, 2016


To say that Nicholas and I spend a lot of time at Children's Hospital would be an understatement. It is, in a way, our home away from home.

Nick's bed

My bed

During these visits we have become very adept at shelving our emotions and soldiering on to survive.

Together, we suck it up
we carry on
and brush it off when it is over.

It is a routine we are accustomed to performing.

We do it without much thinking. It has become a way of life.

But last week, our visit to Children's was different.

Nick endured challenges that defy simple explanation.

He persevered as always, with steadfast bravery and relentless resilience.

But this time, my ability to brush it all off was disrupted.

I was thrown off by this difficult challenge.

Something changed deep down inside.

Something that set me adrift,

separating me from the folks who surround me in life

and disrupting my ability to acclimate back into the world.

I don't know how to describe it,

a perpetual state of PTSD maybe (?),

except to say that I have developed a deeper, more profound respect for my son

if that is possible.

My hero

Sunday, November 6, 2016

Mothered by Mother Nature

I will admit it.

I am a gal who spends entirely too much time locked inside of her brain.

I think, think, think, plan, plan, plan and worry, worry, worry.

Sometimes, however, Mother Nature comes to my rescue.

It is as if she is scolding a small child.


in front of my face,

she places something so beautiful,

so  breathtakingly divine,

it stops me.

My mind,

and obsessive thinking,

are halted

by a kind of silent screeching of brakes

as I stare in amazement at the wonder of the world.

A powerful reminder
 to enjoy the beauty of what is directly in front of me
and obscured by too many restless thoughts.

"Are you awake?"
she asks.