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Monday, September 29, 2014

That Was a Week!


It was Saturday morning and I was sitting in the library of a middle school for two hours while Hillary attended a craft class.  I like doing that although it means that we were up and out the door fairly early.  It gave me time to reflect on the week just ended and its varied events.

The workweek began with a mix up with Hillary’s program bus.  It didn’t come until I called to find out if it had broken down.  They thought I had left a voicemail stating she wasn’t going that day, I assured them that was not the case and they sent the bus to get her.  The bus pulled away and I began to back out of my driveway.  Already rather late for work I was very upset when a garbage truck blocked me in, and it wasn’t even pickup day for our neighborhood.  I laid on the horn, shouted and gestured out my window until the truck moved.  But it backed up which meant I had to take the long way out of the neighborhood since our roads are barely wide enough for two cars to pass, let alone a truck and my van.  I sped through the streets for my two mile commute and just as I turned into the half mile long school driveway I spied a police car which prompted me to let up on the gas pedal so I could obey the 15 miles per hour speed limit.  It seemed an eternity passed before I reached my parking spot and I was now 10 minutes late clocking in.  Luckily I work with wonderful ladies who began my work for me because no matter what time I get there, lunch is being served at the appointed time without regard to our readiness.  The next few days passed without further stress inducing incidents.  Friday was rolling along fairly well until, 5 minutes before my time quitting time, a phone call came in for me from the day care director stating that they called 911 because Hillary was having a long seizure. I’m glad I work only about a mile away so that I could get to the care center quickly.  However, as I sat waiting for the light to change so I could cross over the highway and zip down to be with her, emergency vehicles came from every direction, lights and sirens screaming.  I knew where they were headed—the same place I was!  When I arrived there my princess was, looking a bit pale, annoyed, and very tired surrounded by EMS personnel, policemen, and a nurse.  I signed a release form and took her home very glad we were able to avoid the emergency room. A long seizure like that doesn’t happen daily, but a couple times a month; usually at home.  I’m glad the staff is so careful about her.  She was fine after a nap and a snack.

Saturday after the craft class and a brief stop at home to freshen up we were off to an Oktoberfest.  We met my brother and his wife and my niece there and we were having a lovely time talking, listening to music and munching on German potato salad, sauerkraut and assorted German meats when my sister in law, who sat across from Hillary and me, said that Hillary had a bloody nose.  Indeed she did, and a bloody hand and face too since she was rubbing her face.  She looked like she was starring in a horror movie.  Fortunately I carry wipes with me so was able to clean her up without too much fuss.  It seemed a fitting end to the week somehow.

Some weeks just seem to be crazier than others.  I hope not to repeat the crazy parts of last week this week or ever!

Sunday, September 21, 2014

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 22nd 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.