“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 TheMighty.com 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 9^th 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.

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.

Gratitude and Attitude

Today I have much gratitude
For the freedom to choose my attitude,
On this nineteenth day of November
I'm thankful I don't often surrender
To the negativity all around,
With optimism I am usually found.
2013

I wrote this little ditty in 2013, I am not sure what was happening in my life that inspired me to write it. It was Hilly’s final year of school, and there were many unknowns about the future for both of us. Her in regards to where she would be going instead of school after graduating and me in regards to employment. It would have been easy because of those two situations alone to fall into pessimistic and negative thoughts, but I didn’t.  I may have visited that way of thinking sometimes but I chose not to dwell there. I still choose not to live in the negative; I find it exhausting.
*****************

Well my pies may not be pretty,
And the stuffing from a box,
I’ll be wearing comfy jeans,
And maybe slipper socks,
But the food will be delicious,
And the company divine,
‘Cause all we really care about,
Is having a great time.
Happy Thanksgiving!2017

This one I wrote the night before Thanksgiving after spending the day preparing for the feast with my brothers and their families Thanksgiving Day. Television programs and social media were filled with images and tricks for the perfect day, everything from what to wear to dinner time subjects to avoid. Well I don’t think I’ll ever be featured in a “perfect Thanksgiving” segment, but it suited us and that’s what matters to me. We are not a noisy, drama driven family. We talk, reminisce, and laugh a lot; we compliment each other’s offerings to the meal, and eat too much. If someone falls asleep, nobody is offended, in fact, Hilly got up in time to watch the parade on TV in the morning, then went back to bed and didn’t want to get up until dessert! I guess that’s the best part of the meal for her, and that’s fine. We are all unique, and accept each other as we are. That’s what helps make gatherings pleasant in my mind. Good food, no drama, respect and love for each other. I hope you had a nice Thanksgiving Day, and choose to live in gratitude with a positive attitude.

October Poems

The Autumn sun is late to rise,

Yet earlier to set,

We greet the days with bleary eyes,

And think of challenges we've met,

Shorter days can give us time,

To reflect on our life's events,

With cooler air and longer nights,

With ourselves we reconnect.2016

Early morning fog and mist
Obscure my view of the trees,
There is no sun to dazzle us
With bright display of leaves,
Sound is muted, birds don’t sing,
A hush lies o’er the land,
As I look outside I realize
Soon we’ll all have rake in hand.
2017

Thursday Haiku

The week is near done
Our weather is getting cooler
Autumn should be cool
2017

This gross weather’s making me cranky,
Mother Nature is acting quite wanky,
If this doesn’t stop,
I’l be blowing my top,
So enough of this weather that’s stanky!
2017


Leaves are falling
Through sticky air
Can’t find a
Cool breeze anywhere
October weather’s
Up and down
Cold then hot
And all around.
2017

October dawns with air that’s cool,
As is generally the rule,
With shorter days and crisper air,
And golden sun beyond compare,
The trees will sport their colored leaves,
And at the end a ghostly breeze.
2017


Autumn is my favorite season. Every year I get through Summer’s heat and humidity by looking forward to cool, crisp mornings and sunny, comfortably warm afternoons. This year, however, we have had few cool mornings and many (too many!) muggy, warm days and nights. It makes me feel pretty cranky! The leaves are mostly turning brown and falling off the trees. Not many red, yellow, and orange foliage to be seen.  I don’t like it, but there’s nothing I can do about it! It’s quite maddening when the weather isn’t cooperating with your expectations, isn’t it? By now we should be needing to turn on the heat but instead we are running the air conditioning most days. So it’s not like we’re even saving on the electric bill with the warmer weather. Ugh!

But enough of my mullygrubbing! On the good side, I don’t need a coat most days and I like that as I find them a bit restrictive. I can still enjoy reading outside and seeing flowers bloom. Also, I like not scraping frost off my windshield and having no worries about ice on the deck in the morning. So, I guess if the weather is going to be unseasonably warm I might as well enjoy it because before you know it I’ll be whining about snow.

There's Always Laundry

Now that I'm back to my lunch lady duties during the week, I do most of the laundry on the weekends.  There is a mountain of it on the bed by the time I get to folding the few loads I manage to wash and dry during the week, and oh how I hate doing it!  Putting it in the washer and dryer doesn't bother me, but the folding and putting away just feels like a never ending task.  I especially dislike matching up socks; there always seems to be a few without mates and it is an age old question about how that happens!  You put 2 socks in the hamper, the washer, and the dryer then only one comes out.  Where do they go?  It's one of life's great mysteries.  Anyhow, laundry is one of those tasks that we must do--clothing, bedding, and towels don't wash themselves, that's for sure!  Last weekend I saved it all for Sunday because I decided that I wanted Saturday to relax and do as I pleased.  In the morning we took Hillary to an art and crafts activity run by a nonprofit disability advocacy organization, and while she was crafting I helped another parent stuff envelopes for the group's annual fundraiser.  So I didn't feel too guilty taking the rest of the day off!

And so it was that in the afternoon I spent time outside on my favorite seat on the back deck with a paperback novel and some iced coffee.  It was a beautiful day, very warm for the end of September, and blissfully absent of the sound of lawn mowers and leaf blowers.  I think it's important to take a day whenever possible to do something that you find enjoyable and restful.  For me that usually involves a book and a beverage and some quiet time.  Being outside with those things is a bonus!  It's so pleasant to read a bit, then look around at the trees, the sky, birds flitting from branch to branch and just appreciating my surroundings in general.  I spend so much time during the week running from task to task both at home and at work that I need a lazy afternoon on the weekend to recharge a bit.  My life is full, and I'm not complaining, but a break is always most welcome.  It helps my brain function better, and gives my body time to recoup from the weekday demands.  One thing I know for sure is that housework will still be there waiting to be done when I get to it, and that there's always laundry.  Unless you're a nudist, but that's another story.