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, January 14, 2015


It has been back to reality this week, as I resume my caregiver responsibilities.

But the good news we received over the weekend from Nick's hospital stay has replenished my soul and breathed some fresh air into my lungs, rejuvenating my tired spirit. My load seems lighter as I carry on with my selfless duties with a smile on my face and a dance to my step.

Flash, our naughty cat, was due for his annual checkup. So yesterday, I packed him unwillingly into his kitty crate and headed off to the vet's office, whistling a happy tune.

At the clinic, the handsome young vet, examined the frightened feline.  He checked his eyes, ears and coat, but seemed to linger a little too long as he listened inside Flash's chest. Immediately my heart tumbled down into my stomach as a dreadful familiarity hijacked my happiness with one swift, heavy blow.

"It sounds like Flash has a heart murmur," the vet stated directly. "He will need to have some further testing to determine if it is a harmless condition or something structural that may require advanced medical intervention. I suggest he receive an ultra sound."

I must admit, at this point, I almost laughed out loud at the absurdity of my life but thought better of it since the gentle vet would probably question my pet caring capability, not to mention my mental stability.

I thought of my children's attachment to this cool little kitty and the pain they would feel to lose him as the young man began to explain the ultra sound procedure to me. I told him with a smile, that it was not necessary for him to continue since I am the parent of two children who are medically complex and had in fact just returned this weekend from a visit to Children's.

The vet smiled compassionately. He cut immediately to the chase and told me it would cost around $350 to perform the test (not exactly chump change) He said it was not an emergency and we could certainly wait six months or so before performing the procedure.

At this point, I did not know whether to laugh or cry at my interesting predicament. It is clear that for some unforeseen reason my role as selfless family caregiver must continue at break neck speed with no reprieve possible. There is something more I need to learn.

But really.....I can't help but wonder......WTF?

Enough Already