Old Notebooks

Before I turned on the computer tonight I was looking through some old notebooks, searching for something I wrote in high school, intending that to be the subject of this post.  I was not successful finding what I was looking for, but realized that each of the notebooks I found was a time capsule.  The one that stays with me is from Hillary’s first year or so of life.

         It begins with a record of a dream that I had which although was of a somewhat disturbing nature ultimately left me with a peaceful feeling upon awakening.  There are several diary type entries about Hillary’s development, diagnosis, and prognosis; as well as my hopes for her life.  There are notes from doctor’s visits and phone calls, test results and questions I wanted to ask (and did, and recorded the answers).  I found the spelling of my friends’ daughter's name and the birth information for my neighbor's second child. There is the phone number for my sister-in-law’s hospital room from when she had brain surgery, and a few notes about bills that needed paying.  There were a couple of rather poignant poems I wrote, and a page that Anna drew on with a red marker.  On the covers are some scribbled phone numbers and the license plate number for another sister-in-law’s car, along with some doodles and dates.  On the final two pages are a recipe I copied from somewhere for a casserole.

         Looking through that notebook was a quick look at a very stressful, eventful time and I’m glad I have it, to help me remember how things started with our special needs journey, and to see how far we’ve come.  It was a bittersweet thing to find and reflect upon, but I’m so glad I have it.

``     ``                              ``                                               ``     ``

Here is the recipe on the final pages of the notebook:

         Hungarian Kielbasa & Noodle Casserole

Prep: 20 min.

Cook: 43 min.

1 lb. potatoes, cut into ½ “ pieces

½ lb. extra wide egg noodles

2 Tablespoons butter

1 teaspoon vegetable oil

1 large onion, chopped (1 ½ cups)

1 ½ teaspoon paprika

¼ teaspoon salt

1 cup chicken broth

½ lb. kielbasa, cut in half lengthwise & thinly sliced

1.)       Grease a 2 qt. casserole.  Heat oven to 375 F. Place potatoes in a large saucepot of lightly salted cold water.  Cook over high heat until water comes to boil. Reduce heat & simmer about 10 min. until just tender.  Remove potatoes with slotted spoon & set aside. Add noodles to simmering water in same saucepot & cook 5 min. or until just tender.  Drain well & return to saucepot.

2.)       While potatoes are cooking, heat butter & oil in a large nonstick skillet over medium-high heat.  Add onion & cook 8-10 min, stirring occasionally, until tender & lightly browned.

3.)       Add diced cooked potatoes, paprika & salt to onions in skillet.  Cook, tossing, 2 min. or until potatoes are golden red.  Add chicken broth & boil 1 min.  Pour potato mixture over noodles & toss to mix well.

4.)       Pour mixture into casserole.  Toss kielbasa over the top, tucking some pieces into noodles.  Bake 20 min. or until heated through.

Tuesday’s Thoughts

         We’re having some lovely late summer weather, blue skies, gentle breezes, cold nights, warm sunny days in the 70’s; just perfect!  When the afternoon begins to wind down and the sun is slanting, deepening the shadows by dinner time I’d like to go sit outside and watch the day go to sleep while sipping some spiced cider or mulled wine.  Oh how I would love to be that person!  Alas, that is not how my days end.  I am, instead, inside my house.  Feeding and bathing Hillary, making dinner, packing lunches for the next day and taking care of the dishes.  Such is my lot in life, right now anyway.  One day before the days are too short and too cold I’m going to be that person.  I’m going to just treat myself and put everything on hold or get someone else to do some of it so I can try that person on for size.  It’s nice once in a while to step into different shoes for a bit and see how they fit.

         I’ve been making mental notes about things that need to be done outside and the first thing on the list is remove the hanging baskets as the flowers have died and it’s beginning to look like nobody lives here from the street.  The flowers came back nicely the end of July once the hottest weather broke.  The potted vegetable plants didn’t produce this year, but they were still nice to look at and as long as they are alive there is hope that something will appear.  The flower garden we tried to plant along the driveway was overtaken by some aggressive weeds.  We may need to think about some landscape fabric or perhaps newspapers under the mulch next spring.

         We gave Hillary a very nice 21^st birthday party at a local restaurant.  We bought Mylar balloons and tied them in twos using plastic bead necklaces as weights.  Those balloons are so festive and Hillary loves them.  Now they’re home with us and when the air stirs and they knock together it sounds like someone is walking through the house—kind of creepy when I’m here alone.  Perhaps I’ve watched too many crime dramas.

         That’s probably enough thinking for a Tuesday evening.  After all, I’m still trying to recover from Monday.  Nothing special happened Monday, it was just Monday.

Beginning the End

         The final school year for Hillary began last week, and her 21^st birthday is coming in a few days.  It’s the beginning of the end of life as we know it.

          I’m glad for me that this is the last year I will have to fight with the school system to give my daughter the services she needs.  I’m so sad for her that in just 10 short months she will move on to a place that is not filled with young people and lots of hub bub.  Things will be different for both of us, as I will be unable to work the hours that I do now since the day program I hope she will attend runs 2 hours less per day than school does.  Change is hard, even when it’s expected!  There are so many things up in the air and I find the unknown to be unnerving to say the least.

         Once a developmentally disabled person becomes an “adult” at the age of 21, they are no longer eligible for public school.  They may finish out the school year in which they turn 21 but then they graduate.  They are then at loose ends, out into the great abyss of the world where no school bus comes to pick them up, and no staff waits to greet them and help them through their day.  My daughter is “lucky” because she is so disabled as to be eligible for a medical day program.  At least there will be something for her to go to so she doesn’t have to just stay at home with me, bored out of her skull, days broken up only by trips to the mall or supermarket or library.  What kind of life is that?  Although it’s not about me, I am affected by it all.  I will need to find a new job, a prospect I don’t look forward to at all.

         In the meantime, I’m determined to try and enjoy this final school year, and my final year at this job with people I so love working with.

What Have I Done?

         I would love to turn on my computer every day and write, or just look around the internet, maybe do some research.  I promised myself in January that this year I was going to do just that, every day for at least 30 minutes. Ha!  Promise to self--broken!  Realistically the time I would be able to do that would be about 8:00 pm.  That’s the time by which all of the other tasks that need my attention most are finished. It’s my official “quitting time” from my job as mowifrienhomemaker. (That’s mother, wife, friend, and homemaker)  I find, however that by that point in the day the last thing I want to do is turn on the computer.  Even though it is something I will enjoy, my energy is just gone.  I look around and say to me, “what have you done all day that you should be so tired?  It looks as if you’ve done nothing!”  Oh how unkind I am to me sometimes!  There may be dust, the floors may not be swept or vacuumed, there may still be clothes in the baskets, dryer and hampers, but you know I have not been idle.  I’ve made sure everyone has clean clothes.  I’ve given my princess her medicine and changed her several times, as well as spoon feeding her each of her meals.  I’ve prepared and cleaned up meals, grocery shopped, made sure all supplies are at hand for whatever is needed.  I’ve made phone calls, chatted online (on the iPhone), gotten the mail, paid bills, and a host of other small tasks that need to be done in the course of a normal day.  If it’s a work day for me, I’ve gone there and run around for my allotted time.  It just feels as if I’ve accomplished nothing because most of what I do cannot be measured or seen by a casual glance.  It is, rather, an accumulation of my family’s good health (especially Princess Hillary) and happiness by which one can tell that I don’t sit idle.  So tonight I say “kudos to Sue!” for a job well done, and for putting aside the fatigue and turning on the computer!  I will try from here on to do that at least 3 times a week, and to be kinder to myself.  We all should treat ourselves with kindness, give yourself a break—it feels great!