Year Twenty Two!

Twenty two years ago our second child was born. Outwardly beautiful and perfect, a true bundle of joy. Unknown to us at that time she was afflicted with Aicardi Syndrome. We had no clue exactly how this innocent little person would change our lives, our hopes and dreams, and shape us all into who we are today both individually and as a family. She came here not for us to teach her but for her to teach us.

Aicardi Syndrome includes malformation or complete absence of the corpus callosum and other brain deficits, retinal lesions with other eye abnormalities, scoliosis and other skeletal problems, and intractable seizures.  Life expectancy is shortened with the literature (at that time) stating 3 years maximum.

Recently we celebrated Hillary’s 22^nd birthday by taking her to a street fair in a neighboring town.  The weather was perfect with low humidity, air temperature around 70, a light breeze and a bright sun in a deep blue sky dotted with puffy white clouds.  As we wheeled her through the crowd occasionally one of the vendors leaned over to talk to her.  We told them it was her birthday and she ended up with a small collection of trinkets—stickers, key tags, and a balloon.  She enjoyed the extra attention and we had a nice time.  When we returned home we had chocolate birthday cake and ice cream which she loved, and some gifts wrapped in brightly colored shiny paper.  She enjoyed looking at the gifts but lost interest as we opened them and showed her what was inside.  Sometimes she’s a funny girl!  Over all she enjoyed her special day very much.

We have learned through Hillary that slowing down and enjoying the simplest of things is a good way to live, birthday cake is meant to be enjoyed without guilt, and every year survived should be celebrated for the gift that it is.

Saturday P.M. Thoughts

It's Saturday evening and I am in my nest once again. Although the calendar says April and the sun sets after 7:00 it feels more like late February here. In recent years we've contemplated running the air conditioning a day or two by this time as the weather was unseasonably hot. This year I can't even put my winter coat and gloves toward the back of the closet because I still need to wear them most days. I suppose that soon enough I'll be complaining of the heat but right now it would be nice to sit in the sun on the deck and listen to the birds while sipping iced tea. I stepped outside after dark for a breath of air and despite the chilly breeze enjoyed how clear the sky is and how bright the half moon and stars are. I clearly picked out Orion and thought about how nice it is that I can do that. How somewhere out there in the world is someone who isn't able to do that. Either because they have a disability or illness preventing them, or it is unsafe where they live to step outside after dark, even just outside their front door. Suddenly I thought how blessed I am to have my little house, my little family, and live where neighbors wave and say hi, exchange pleasantries. I know, too, that if ever I needed help I could knock on their door and they would oblige. Sometimes I get so caught up in the chaos of my days that I feel grumbly and discontented with my lot in life. When that happens it's good to take a day and slow down, enjoy what I have, and reflect on how nice it is to be me.

This is the neighbor's cat who enjoys sitting atop our grill on summer mornings. I was able to catch this picture of her last year. I can't wait to see leaves on the trees again!