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!

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.

Summer's End Haiku

This odd summer wanes

Everything seems mixed up

There were some good times

That about sums it up. We began with Hillary's high school graduation and my unknown employment status. Then Hillary began her next chapter at the special needs medical daycare and I tried to sort through both objects and papers as well as emotions from the past 18 years. Hillary transitioned to her new program very well. I felt as if I couldn't get my feet under me. There were, however, good times spent with friends and family. Shopping at the mall, lunches, sitting around a backyard campfire talking with friends late into the evening, game days, a wedding and of course vacation were the best parts of the summer. The weather was mostly beautiful-warm with low humidity, a few rainy days and a couple very hot humid days thrown in just to remind us of the season. The hottest high humidity days came in September where on the calendar summer remains until the end of the month. Along with the heat the final few weeks of the season brought a new employer in the same job, same location, and mostly the same coworkers but shorter hours for me. Shorter hours necessary because Hillary's daycare starts later than her school day did. As we settle in to our new routines and my feelings begin to sort themselves out I look forward to finishing dealing with those objects left from the 18 years of Hillary's school career and make room in my house and my head for the future.

Favorites

I've been thinking about some of my favorite things and places this summer. 

1. Sleeping past 4:00 a.m.

2. Cool mornings with a cup of tea.

3. Iced coffee in a glass glass, not a plastic one.

4. Old episodes of "Bones" and "NCIS".

5. Watching the Yankees.

6. Reading in the gazebo by the veterans memorial and pond at Turkey Brook Park. (It just sounds nice, right?)

7. Leftovers for lunch.

8. Adam's Family Restaurant.

9. Panera, with Anna.

10. Hearing the peepers at night.

11. Sitting around the fire pit in a friend's backyard sipping iced tea and laughing until midnight with a group of friends.

12. Watching vegetables grow and waiting for tomatoes to ripen.

13. Road trips.

14. Getting rid of clutter.

15. Game day with my sister-in-law and niece. 

16. Veggies and dip.

17. Thunder rumbling in the distance.

18. Barbecue chicken.

19. Carnivals.

20. Bright sun, blue sky and white puffy clouds.

Make yourself a list of your summer favorites, it's a nice way to end the day.

Looking toward the pond from inside the gazebo at Turkey Brook Park.

Ending, Beginning & Marking Time

         The end of June the school year came to a close and with it Hillary’s school career and my employment by the school district food service.  The four years we spent at the high school were by turns rewarding and maddening.  I was happy to see that time end for many reasons, exhaustion being one of them; for both myself and Hillary.  Seeing the end of predawn wakeups and bus pickups was most welcome! We celebrated graduation with a small party and moved forward.

         After spending months nudging the state along to have all paperwork done and arrangements in place by graduation, Hillary was able to begin attending a day program for medically compromised developmentally disabled adults.  The transition went really well and she is quite happy with the new situation which starts later in the morning, is shorter hours and fatigues her less as it is slower paced than school was.  I like it too as I no longer have to get up as early in order to have her ready for the bus. It was a quick turnaround for one thing to end and a new one to successfully begin.  What a blessing!

         I’m spending time this summer resting and trying and get my house and head in better order; clearing clutter and old papers, donating items, and throwing things away. Emotions go along with many of the cleaning projects I am undertaking so each day is a little bit of a roller coaster ride.  I find myself at times nostalgic, at times sad, annoyed, angry, amused and happy as I look at old notebooks, pictures and toys long ago set aside.

 I’m also trying to figure out what to do next for employment.  Although our board of education chose to hire a private company going forward to provide food services rather than keep our department going, the food service company has offered any of us who wish to continue in this profession a chance to work for them.  I’m going to have to work fewer hours than I was due to Hillary’s later and shorter schedule but current plans are for me to accept the offer.  For now, at least, and I’ll see how it goes and how I feel about it.  If I don’t like it, or for whatever reason it doesn’t work out for me then I will have to find something else.  It will give me some income as I try to figure out what else to do. So I am marking time job wise and getting used to a new rhythm to the days.

         The recent changes to my life were not as difficult as I had imagined they would be, and Hillary seems to have no ill effects from the changes for her.  It seems as if life changes don’t have to be hard if I look to the future and realize that I don’t have to figure everything out immediately.  There’s something nice about marking time.