“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.

Three Friends

         Three friends went to dinner last evening after not seeing each other for a few months.  They fell easily into conversation, drove the waiter nuts (probably) because they were so caught up in discussion of their lives they forgot to look at the menu causing him to return several times to inquire if they were ready to order.  Even after their wine glasses and plates were emptied and cleared away they lingered over mugs of ice water until they were the only patrons left and the music was turned off; as is always the case when they meet.

         It’s been over 22 years since the three friends were brought together by their youngest children at early intervention therapies.  They have two children each, the first borns typical in development and the second borns with developmental challenges of varying degrees.  They have seen each other through the many emotions of parenting both special needs and typical children, sharing each one’s triumphs and setbacks.  When one of the children succumbed to her disorder at the tender age of 16 they walked hand in hand through the darkness of grief and keep the child’s memory alive still.  Although they come from three very different backgrounds, and would never have met if not for their children, they feel a kinship which supersedes dissimilarity.  Emotions can be a powerful bonding agent, and is a large part of what keeps these three together.

         When we feel an emotional connection with someone, it doesn’t matter what the details of their individual situations are.  The details give us something to discuss; differing viewpoints to consider as we all try to figure out this crazy life we are given. It’s all part of being human and if we find others who can be our companions on the road it’s beautiful.

More Bruises to My Heart

It happened again.  Yesterday I filled out some forms required to plan for Hillary’s future.   I don’t like to think about the realities of that, it makes my heart hurt.  The forms require writing down everything that she needs done for her—everything she can’t do—which is pretty much everything.  It gives such a sad, depressing “snapshot” of her.  It doesn’t tell who she is, what she’s like, what she can do.

I went to the library today, leaving Hillary with my wonderful respite woman for a few hours so I could run some errands and have some time to myself.  While there I noticed two young women in wheelchairs with their attendants.  I couldn’t help but think how in just 2 short years Hillary will no longer be in school, and our options for what she will do to fill the hours of the day are limited.  One option is to hire attendants to take her places.  While I know that it is wonderful to have options at all, I think how sad and lonely that would be for her.  She likes to be around other people who are lively, talking, laughing, doing things.  None of the available options for her include as much of that as she has at school every day.  It hurts my heart.

I always knew that these days would come.  There will be more and more forms and decisions to be made over the next couple of years in regards to Hillary.  Just because I knew this was coming, doesn’t mean it’s any easier.  At least I wasn’t blindsided by it.  Forgive me if I occasionally post about these things, they are not happy thoughts, but necessary, and by confronting them I can continue to give Hillary the happiest life I am able to provide.

CRYING

“Every day I have a choice; I can sit down and cry, or get up and laugh.  I choose to laugh” –me (as far as I know)

          This is my basic philosophy, and it generally serves me well.  Some days it’s a difficult one to live by, but I do my best.  Aside from the stress level that’s the norm for someone caring for a child who has severe multiple disabilities, works a part time job, and living as typical a life as anyone, I’ve entered into a period of chronic pain.  I’m hopeful that it won’t always be so, but for now it’s been almost 2 months of back/hip/leg pain, a couple of tests, phone calls, treatments and not sleeping enough.  The well of tears that for years I’ve managed to keep from overflowing daily is running a little high.  A few days ago the well overflowed, and wouldn’t stop—while I was at work, no less!

          I’m employed as a “lunch lady” in our local high school.  I work with 9 other ladies who are mostly easy to work with and we have a lot of fun as well—a great mix of personalities.  We serve the whole school at the same time, which is a couple of thousand potential customers.  Not everyone can fit into the lunchroom at the same time so tables are set up in the gym, and we take 3 serving stations out there every day.  For the month of April I was manning the snack kiosk out there. 

          There’s a team of custodians who help us get all our things out to the gym and back, a process that takes about 10 minutes total to get all three kiosks, snack racks, coolers, and warmers safely moved out of the way before the students are dismissed from lunch.  The other day it was getting late and some of the students were dismissed already, and the custodians were short staffed so we were taking a different route back, going through the rows of tables and out the back of the gym rather than down the hallway near where we set up.  It’s a bit like a parade when we’re on the move, the big blue kiosk, me with the snack rack, and someone behind me with the pretzel warmer, the big plastic pretzel on top quivering.  Rushing to keep up and trying to avoid running into any staff or students on my right, I didn’t realize there was something dangerous on my left until, in what I imagine was a spectacular display, the cart stopped, I didn’t, and the momentum took both the cart and me to the floor with a crash, and a spray of chip bags and cart pieces exploding around me!  One moment I was rushing to get back and count my inventory and money, the next I was being helped up by the custodian who had been behind me asking if I was ok as staff and students picked up the cart and chips.   All I wanted to do was cry.  Crazy emotions!  I made it back to the kitchen (almost) without any tears, but once I got to the coat room and restroom they flowed.  They flowed and flowed and flowed.  No matter how many times I washed my face, took deep breaths, and gulps of water.  I almost had it together, I brought back my leftovers and all the sudden there was Linda, the mother of 4, asking if I was ok, saying my pants were ripped, pulling up the leg and telling me I was cut and needed to go to the nurse.  Then Anna, asking if I wanted her to sew the rip for me.  And I cried, every time one of the ladies asked what happened and was I ok, hugged me, patted me on the back, helped me with my work, gave me a candy bar. Every kindness made me cry more.  Honestly, the whole thing was not worth crying over, yet even after I got home, I lay on the bed and cried, got Hillary off the bus and cried. And. I. cried.   I finally managed to stop before bed.

          Was it the medication that I’ve been taking, or being worn down from chronic pain?  Well, probably it was the perfect combination of those things and ignoring what is truly a basic human need—the occasional good cry.  I regularly laugh until I cry, sometimes I think I should have been named “Silly” instead of “Susan”, but rarely any more to I allow myself the luxury (yes, LUXURY) of a good cry.  It’s an outlet that keeps things on an even keel for me, able to handle most anything thrown at me.  Just as laughing releases tension, so does crying, whether it’s from a sad movie, a moving story, or out of frustration, crying acknowledges that not everything is ok, but that’s not a bad thing.  Holding it in works in the short term, but those feelings need to be released so they don’t keep collecting, eventually overflowing at an inappropriate time (like at work over an accident).  So what have I learned from this incident? I need to slow down a bit and take time to cry occasionally over things that happen, or things that scare or upset me.  A few moments of tears helps keep those negative things from collecting so much that a meltdown occurs.

          (Oh, and of all those bags of snacks that went everywhere in the gym that day?  Not one was missing.)