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 8, 2017

Three's a Crowd

Nick is headed to Children's on Monday for surgery.

He is scheduled for an appendicostomy procedure.

We will be in the hospital for 2-5 days depending on his rate of recovery.

I will be assuming my usual place at his bedside.

It is a 2 hour surgical procedure that will improve
the overall health and motility of his GI tract.

While this is not a complex operation, like any surgery there is a risk.

Risk is not a word I like to use when it comes to Nick and his health.

Sitting passively in a hospital setting is not a role I handle well.
The warrior within me stirs restlessly.

I feel as if I am immobilized on the dance floor as the devil circles around me.

When you're the parent of a child who is medically complex;
you're never alone with your child.

It is always: you, your child and the other guy.

The one you don't talk about.

The one who is always there.


His icy breath upon your neck,

He waits for you to slip;

a medical move too boldly executed.

a single opening for him to exploit

an opportunity

to lie or cheat


He is the thief who haunts me.

But as I wallowed in my fear this week, I was strangely comforted.

We met with his surgical team on Monday to review his pre-op plan.
 I am happy to report, it's an impressive group
of nurses, anesthesiologists, surgeons, and residents.
Surprisingly, all of them women.
They were smart, kind, patient, attentive and most importantly inclusive.
They made me feel like an important member of the team.
And despite being some of the most highly educated minds
in the country,
they were emotionally present,
they listened.
Together, we created a surgical plan for Nick that just felt right, almost magical.
They calmed and inspired me with the power of their healing feminine energy.
I felt comforted and reassured by their solidarity,
and realized,

 we are not alone.

We are thankful for your kind support dear readers