Total Pageviews

Wednesday, March 14, 2018

Go Away Winter

The morning’s dark,
Outside it’s cold,
This winter thing
Is getting old,
Give me sun,
And blooming flowers,
Not falling flakes,
That last for hours.

I mean it, I’m tired of Winter! This year it seems like it’s been extra cold and dark, and we’ve had 3 big snow storms in the last 2 weeks. Snow is pretty—on Christmas Eve & Christmas morning. After that, it’s just a hassle. It must be cleared from the deck, driveway and cars. Driving is dangerous and school and daycare centers either close or delay opening. It might melt during the day and refreeze at night making the roads and walkways treacherous to drive and walk on; pushing my daughter's wheelchair in snow and ice is not easy either!  I'm tired of spreading ice melter all over the deck and driveway, and the mess snowy boots and shoes make of the floors in the house.  I'm weary of bundling up in a bulky coat, scarf, and gloves.  Winter time laundry is more time consuming; the clothes are bigger and take up more room in the washer so there are extra loads, and those larger, heavier clothes take more time to dry, and the hampers fill up so quickly!  Soups and stews are nice, but a tossed salad of fresh from the garden (or local produce stand) vegetables, and chicken or a burger cooked on the grill are so much easier.  Cleanup is 1, 2, 3, and boom! You're done with summer cooking. I'm longing for a sunny, warm weekend afternoon spent sipping iced tea and reading on the deck while a light breeze gets the wind chimes tinkling in the background. Doesn't that sound like heaven?

Well, it's too bad that I'm tired of the cold and snow because if the weather forecasters are to be believed, we're in for at the very least more flurries and cold temperatures for the next 10 days, with the possibility of a 4th winter storm next week on the first day of Spring.  Holy cow! I've had enough!  I can't take one more obligatory snow picture for Instagram, write one more poem about the snow, and listen one more time to "Operation Snowflake" on the local radio station to hear the school and business closings without going mad!  Of course, I have no choice in what the weather does, so I'll just have to grin and bear it for a few more weeks.  Hopefully once the calendar says "Spring" the weather will catch up and we'll have some nice warm days filled with sunshine and some gentle showers to coax the leaves and flowers out of their Winter sleep and brighten up the landscape.  I can't wait for that!

Friday, March 2, 2018

Taken For Granted

          There is nothing like having surgery or something breaking to make you realize you have been taking things for granted.  My recent hand surgery made me think about how I don’t really think about them and how useful they are nearly every waking minute of the day; and how much I like washing them.  Then my glasses fell apart when I was home alone.  Did you ever think about being unable to do even the simplest things for yourself?  It is frustrating at the very least.
          I had a cyst removed from the middle finger of my non-dominant had, as well as carpal tunnel surgery.  We figured that as long as I was there in the operating room the doctor might as well address both problems.  The surgery was no big deal, we were only at the surgical center about 2 ½ hours before we were on the way home, my hand bandaged, and I was very hungry! It wasn’t painful, and ibuprophen took the discomfort away.  I was instructed to keep my hand dry until the stitches came out in 2 weeks. Do you know how many times a day you need to wash your hands?  Disposable gloves became part of my daily life.  Have you showered wearing a dishwashing glove with elastic around the bottom to keep water out?  I don’t recommend it, it’s annoying!  At least I was able to shower, though, so that’s a good thing.  Caring for Hillary and working each were made more interesting by my semi-useless hand.  Things I normally do with ease were more complicated by trying to compensate and still get things done in a timely manner.  Trying to put Hillary’s hair in a ponytail was hard, pushing her chair was not easy, and I couldn’t pull her up the ramp into the van.  Good thing we didn’t need to go anywhere just the two of us!  What I missed the most was washing my hand, and as soon as I got home from the stitches being removed it was the first thing I did! The second thing was use hand cream.  It felt so good!  I never appreciated that before, but sure do now.
          The day before the stitches were removed was my birthday.  That morning I forgot to clean my glasses before I left for work.  They felt a little loose so I decided that I would wait until I was home to clean them, in case they fell apart.  Once I was home and had finished reading all the birthday greetings on Facebook I took my glasses off to finally clean them, and they promptly fell apart.  The lense fell out and I tried to put it back in, with no luck. Desperately, I tried to get that lense to stay in the frame!  The problem is, I need my glasses to see up close.  So here I was, needing to fix glasses that I needed to wear to be able to fix them.  I remembered that my husband keeps a magnifying glass near his chair.  Great! Now I could see that a screw was missing, and we had a screw in a little eyeglass repair kit (also near his chair—how handy!).  I needed to hold the magnifying glass with one hand, but I needed 2 hands to do the repair.  I was one hand short! One and a half if you take into account that one hand wasn’t functioning at 100% yet.  I was determined to fix those glasses!  Well, let me tell you that determination is important but when you’re short a hand fixing something small like that is pretty difficult.  I couldn’t do it.  After about an hour I realized that I needed to see if I had an old pair of glasses around the house to wear until my husband came home.  I think I’ve been not appreciating my glasses and how I depend on them giving me the ability to see clearly.
          They say that you don’t appreciate things until they’re gone and I believe it to be true.  Whether it’s a person, the use of a hand, or your eyeglasses, when you don’t have them you appreciate how much they do for you.  Thank goodness that it was only a short time that I had to make do without.  I can’t imagine life absent of 2 healthy hands, and eyeglasses to give me clear vision.

Wednesday, February 7, 2018

"How Is This My Life?"

There is a phrase that I mutter to myself frequently these days usually when I'm in the middle of shoveling snow or working my way through a mountain of laundry on a Sunday afternoon.  I could just as easily say it with a more positive connotation when I'm doing something I really enjoy, or looking at beautiful scenery. That phrase is "how is this my life?"

Sometimes I wonder how I got to this place, this particular moment in time, and became who I am.  I can recount life events and decisions I made that lead to going one direction or the other and put me on the path to now.  For instance, what if I stayed in chemistry in high school, toughed it out instead of dropping it on the third day of school?  What career would I have chosen?  Would I have stayed in college instead of dropping out after the first year?  It's hard to say, but I'm pretty sure I wouldn't have met my dear husband and so wouldn't have my 2 girls.  Probably I wouldn't be a lunch lady now.  But if those 2 decisions had been different, I would have missed out on some very dear friends and many eye opening experiences associated with having a child with special needs; and knowing how many hungry families there are right in my own community.  I would have a different house, probably live in a different town and have a very different life.  It's a lot to think about.  I wouldn't want to change anything, I think that my youthful decisions led me to a wonderful place, a good life despite the moments that make me question things.  I believe there would always have been challenges and trials because they are inevitable, just as there would  have been many rewarding moments.  They would be different, I am sure.

I think that as I go forward though life, asking "how is this my life?" is a good way to take stock periodically and gain some perspective.  Maybe make some changes in my thinking and enjoy more of what comes my way.  How is this my life?  Because I have kept moving forward toward whatever comes next.  It's a pretty good life.

Wednesday, January 24, 2018

“A Time When My Emotions Got In The Way”

writer's note:
*This is a rewrite of a blog post from 2010.  I submitted it as an article to but they declined to use it at this time.  Hey, it happens! I decided to post it here, perhaps you will find it of interest or at least informative.*

Sometimes a parent’s emotions get the better of them, and they may act rudely. The parents of those with special needs generally have a high level of stress and emotion already, and when a special occasion comes along it can sometimes be too much. As the mother of a young adult diagnosed with Aicardi syndrome, a condition which includes substantial developmental delays, intractable seizures, visual deficits, and scoliosis, I have found myself frequently doing things I don’t feel like doing. Over the past 25 years of my daughter’s life I have regularly internalized those feelings and put on the happy face of a mother doing her best for the good of her child.  When I reflect on her school years, I see times when nobody would have guessed that I didn’t want to be there. Concerts, scouts, parties, and other activities I accompanied my daughter to were not always where I wished to be.  Of all those times, there were a few that all I could manage was to show up with her, absent the positive attitude.  There is one incident that immediately comes to mind because it was an important milestone for her; middle school graduation.  Generally, I try to be as gracious as possible, but when I’m feeling especially stressed and emotional I struggle with being civil.

After spending 3 years in early intervention, and 6 years in a self-contained therapy based school, we decided that she would attend our town’s schools for the remainder of her school years.  She spent the next 9 years in our brand new middle school, and the final 4 in our local high school.  Her graduation from that middle school was an occasion I had little enthusiasm for. You can’t tell now by looking at the pictures, but I’m afraid that my manners took the night off.
In her last year at the middle school, we had been assured repeatedly by her school case manager that my daughter would be able to stay in that school until she turned 21 and aged out of the educational system.  Things changed and near the end of the 9th year, due to the class size becoming too small, they decided they wanted to include her in the program at the high school for her last four years. Moving on to the high school was a relatively last minute decision, and 6 weeks’ notice was not enough time for me to adequately deal with the thoughts and emotions caused by this development. I was concerned about how well the larger school would be able to meet her needs, if the teachers would work with her appropriately, how many opportunities for inclusion were available, and if the 1:1 paraprofessional who had been with her for a number of years would go with her.   I was not looking forward to attending the graduation ceremony, being unprepared in every way for how I was feeling.  I could have told the school that my daughter wasn’t going to participate in the ceremony, but I try to remember that her life experiences should not be planned by what is easiest for me. I have always just wanted to give her as typical a life as possible within her range of ability, and graduation is part of that. Although I would have felt better staying home, I could not deny her participation. It was a lot more work for me to get her ready at a time of day when all I wanted to do was curl up on the couch with a book and a blanket. As she is sensitive to being touched, she was unhappy about all the preparations we had to do at home to get ready for the special evening. We put flowers in her hair, took pictures, and gave her gifts. During the evening she seemed excited as she looked all around during the processional, smiled at the applause and sat with her peers in front of all the parents. At the time, I failed to enjoy it. Sensing my reluctance to allow her participation, I was assured by the school administration that we would have a parking spot reserved for our wheelchair van, as well as 3 seats right up front for my husband, my older daughter, and me in case she suffered a seizure during the ceremony or we needed to exit with her quickly, and she would be reassured by being able to see us there. When we arrived, the parking spot was taken by someone else, it was difficult navigating with her wheelchair through the crowd, and one of our chairs was missing. I’m afraid that even at this early stage of the evening my graciousness and patience were low, and I spoke rudely to the man taking the tickets. This man was kind enough to ignore my poor attitude when I complained about the missing seat, and asked someone to get us another chair. I managed to get through the ceremony, but the natural excitement of other parents irritated me. In retrospect, I see that part of what I was feeling was fear of the future and a heightened sense of how differently she experienced life as compared to her peers. By the end of the evening I was cursing just above what would be considered under my breath, and barely managing not to shove people out of my way in order to exit the building to meet up with my daughter and her attendant. Once outside, I couldn’t wait to get home, get my graduate into bed and then relax.

Now that time has gone by I am able to see how good this was for her, and glad that I pushed through my emotions that evening. In fact, 4 short years later when she graduated from high school, a genuine smile was on my face the night of the ceremony.  I am thankful for these and so many more memories of her 18 years in school; all of them, the ones where I was rude, and the ones where I was truly happy. I can see now that our children are not the only ones growing and learning during their school years.

Saturday, December 30, 2017

Christmas in Chaos/New Year Thoughts

This year I felt as if,beginning the Sunday before Thanksgiving, and ending Christmas night, I was running at full speed. As well as the normal tasks and responsibilities I have, there were special things to do. Besides parties and holiday events, there was extra cleaning, shopping, planning and cooking.  This is true every year, but this year for some reason seemed extra hectic. I felt as if I was always thinking three steps ahead, and never felt as if I had a handle on anything. My world is chaotic on a good day, and the extra holiday preparations magnified that. I hope I can calm the inner chaos I feel, thereby taming the outer chaos I see.

Each of our Christmas decorations were placed among the chaos that exists every day. I often think that it would be nicer to pack away the everyday things and have a picture perfect house for the holidays; but life isn't picture perfect. It's hectic and disjointed and sloppy, and it seems right, somehow, that this is how we decorate every year. It's fitting our beliefs, our faith, into our everyday lives that's the challenge, isn't it? If that is so, then I seem to be doing a fair job of it.  It's likely that at some point in the next few months I'll notice a decoration that we forgot to put away, and I'll leave it, not wanting to stop what I'm doing to put it away. But maybe they are seemingly forgotten because I need occasional reminders that the spirit of Christmas is needed year round. Maybe I need reminders that joy, and love, and wonder are ever present in our lives if we only tune into them more, as we do at Christmas time. Fitting these things into the chaos of our lives is something we need to do all year, not just for one month of it.

With the turning of the calendar upon us, our thoughts turn to how the year that's ending was, and how we hope the year ahead will be. Some people make resolutions for the year ahead, things they want to improve in themselves. I don't do that, but I do reflect on things that happened in the past year and think if I handled things as well as I could have. The desire to improve ourselves, and in turn our lives, feels like putting hope and faith into action. So maybe those forgotten decorations are reminders to us throughout the year that we take the spirit of that time, especially the hopefulness, with us as we go forward in our efforts to grow into better versions of ourselves.