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.

Wednesday, March 9, 2016


I have learned a new word.

It is pronounced  (Hoop-om-on-ay)

Hupomone is a lexicon, a unique word that you will not find in a dictionary. It was used specifically in the Greek Bible to describe a heightened level of perseverance.

It is a word that describes the ability to endure. Not a "wait for it to pass" type of endurance, but an endurance that implies action, an ability to weather overwhelming circumstances with a sense of present participation, unfaltering perseverance and a patient faith in the knowledge that there is something to learn from pain, something that brings us in touch with our spirit, our soul, our ability to love and feel compassion for others. Hupomone is an ability to keep on going no matter what, to carry on with a sense of deep faith despite continuous and overwhelming hardship.

This word is not only appropriate and relevant to me at this particular time but it is also very spiritually chilling in a deeply meaningful and personal way.

I discovered it by accident.

It has been a difficult time for our family, even by our typical chaotic standards.

Pete broke his wrist.

Weston was hospitalized for medication management

And last week Nick spent many nights in Children's hospital in an effort to diagnose the route cause of some frightening health issues, including an outbreak of severe hives, extreme fatigue, lack of stamina and overwhelming anxiety.

I am not ashamed to admit that my typical feisty spirit unraveled.

I sat next to Nick's hospital bed and wept.

Frustration, helplessness and pain overwhelmed my spirit.

I felt hopeless and lost.

Asking God once again........why?

In an effort to hide my pain from Nicholas, I buried my face in my iPhone, typing a few random letters into my google app, anything to hide my tears and distract myself from the feeling of paralyzing fear.

What appeared on the screen was the word Hupomone.

A coincidence?


But to me it was strength.

A single word that lifted me out of a very dark place.

And I was humbled.