~Reality doesn’t bite, rather our perception of reality bites. ~

My title is a quote from Anthony J. D’Angelo.
Stay with me on this one, if you dare. It is an attempt to explain a very basic, simple thought, but I know it will be a convoluted and complicated process, because that is what it took for me to recognize the magnitude of its simplicity.

Many people in my life have been instrumental in helping me to see “You only know what you know”. This statement has been used to help induce slumber during countless, sleepless, maternal guilt-ridden middle of the night hours. I have stretched that to mean: You can only do what you know, if you had known any differently at any given time, you would have acted differently due to that knowledge….but, and it is a capital BUT, you didn’t know, so your actions were only based on what you knew at the time. Ah, that thought allowed me to sleep and not flog myself repeatedly over my motherly mistakes. In that respect it has served me mightily, but now I have discovered that it isn’t fully true. I now believe that I don’t really know what I know, what I know is only my own perception of knowledge that I have acquired. You have perhaps acquired the exact same knowledge, but what you know is different from what I know because we each perceive the information differently, dependent on all of the individual experiences we have lived. Our past experiences and the emotion that those experiences have embedded in us determine how we perceive everything else. This means when there is something that I might get really excited about or really worried about, another person might think it is an everyday, non-event.  It all comes down to perspective.

I am frequently melancholic between the dates of Columbus Day and Valentine’s Day. Many family birthdays plus ten of the seventeen major holidays fall during that time period. All of those holidays mean disrupted schedules and abundant, visible food,  which makes life for someone with Prader-Willi Syndrome onerous, thereby making the life of a PWS mother sorrowful. Brokenhearted, for years I watched her frustration with an upset schedule and from her determined and calculated attempts to obtain the forbidden, yet present food. I found ways to avoid events and searched the recess of my brain for activities that might please her. When a person feels as if they are starving it is not easy to please them with anything other than food. A challenge, indeed! This has been the way I have experienced the holidays for the past twenty-seven years, but not this year. The melancholy was my issue. I needed to learn another lesson from my daughter and she readily, yet unwittingly educated me.

One night she was in the living room making comments on a new cookie recipe that a friend had posted on Facebook. I wrote her a message explaining all of the high calorie ingredients of the recipe. She described to me how, if she could make the cookies she would use different ingredients and lower calorie substitutions if she could find appropriate replacements. She ended her message with, “but I can’t so I won’t try them.”. She was full of excitement when she wrote her first comment under the post and ended up easily throwing the cookie idea down the drain! Wishing that we could go ahead and whip up a batch of cookies together and nibble on the broken ones as they came out of the oven, I wistfully wrote to her, “bummer, the holidays suck, don’t they?” Grab your tissues now. I can barely see my monitor screen for the tears that have welled. This starving, cookie wanting young woman’s reply to me, her dismal mother was, “they don’t suck they good if make them that way”.

Once my tears and sobbing subsided, I realized that all these years, my anguish was just that. MY anguish. It had never been her anguish. I had despaired over my wishes, dreams and desires for her. I wanted her to be able to build a gingerbread house and lick the frosting and candy from her fingers.  In her simple statement, she told me that she had experienced good holidays, they had not “sucked”. Any person who loves another person has one main wish for their beloved – happiness. In my misguided mind, I thought that because she wasn’t allowed the holidays I experienced as a child, her holidays were unhappy. While I agonized over lip gloss, hand lotion and sugar-free gum to fill her stocking, I thought the stockings I filled were inadequate because they were not laden with fruit, nuts and “sugarplums”. I will admit that the non-edible items were usually flung aside as she searched the empty toe of the sock hoping to find a treat, this action is what cemented her dissatisfaction in my brain.

Our perceptions of the holidays, our expectations of the holidays were completely different. I wanted to move heaven and earth to make her happy when all I needed to do was make them not suck. When I understood that the possibility of me moving heaven and earth was unrealistic, my hopes became more attainable and this year (so far….cross your fingers that I can carry this over into New Year’s Eve!) the holidays were good.
“they good if you make them that way.”

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~You can learn a lot from people who view the world differently than you do.~ D’Angelo

~Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth.~ Aurelius

In all our contacts it is probably the sense of being really needed and wanted which gives us the greatest satisfaction and creates the most lasting bond. Eleanor Roosevelt

You would have seen the man with his shoulders hunched forward and his head watching the floor as he rapidly shuffled down the corridor to escort the paramedics to apartment C104, his rapid, gasping respirations revealed his level of stress. He paced through the dining area of the apartment that was not home, he had a confused look on his face as he fingered items on a table; familiar items on a table that had belonged to former generations.  The table and the items he could relate to, but their placement in this apartment was foreign to him, they belonged at home, under the window where they had been for years. One of the paramedics convinced him to sit for a few moments and gave him the phone number for the emergency room while keeping an eye on his heavy breathing. I was summoned to the bedroom to assist with getting his wife ready to be taken in the ambulance. Standing in the hallway looking in, I could see her sitting on the edge of the bed with impeccable posture. Under her very thinning tufts of hair was a face smiling at the men assessing her. She had her overnight bag fastidiously packed and with the efficiency of a veteran nurse had her husband’s medications organized and labeled for him for while she would be gone. The men stepped out of the room and without any false modesty she allowed me to assist her in putting on a fresh, comfortable nightgown which satisfied her need for “trip to the hospital” decorum. She took hold of my arm and was pulled to a stand. I held onto her hips, placed her cane in her hand and turned her over to the medics who accompanied her to and lifted her onto the waiting  gurney. While taking her purse and overnight bag and jockeying the gurney out of the apartment, the paramedics assured us that the E.R. nurse would phone and give us an update as soon as possible. We were told to rest here, there was nothing we could do if we were sitting at the hospital in a hard, straight chair. I was happy for their conviction and authoritative voice. Once the apartment door closed, the man was unsure what to do and once again fiddled with the items on the little table. After pushing the furniture back to the original configuration, I sat at the dining table and beckoned him to join me. He thanked me for being available to assist them and choked on his words, unable to mask his emotion. Resting his forehead in his palm, he relied on his arm to keep his weary head from plopping to the table. I knew that he valued pride, as only those from America’s Greatest Generation do, considering vulnerability a weakness and neediness an abomination. I told him that I consider them family and that these are things that family members do for one another. I explained that I truly understood how difficult it is to receive help from others and that it has been something I have struggled with for the past twenty-six years, since Prader-Willi Syndrome entered my life. Feeling needy and vulnerable can weigh on a person, until you realize allowing others the chance to be of assistance is a gift to them. Especially during times of grief or trouble loved ones want to help you. What they really want is to take away the hurt and eradicate the source of the pain, but since that is not within their power they want to help in whatever manner they are capable of. For some that might mean lessening a financial burden. For others it is any number of practical, tangible chores that need to be done, such as gassing up a car, providing meals, cleaning house, laundering clothing, and tending to children. Some people’s best way to help is to simply listen, provide a shoulder to cry on or a hand to hold. Everyone has their own best ways to help and their best can change according to the circumstances of need. As Emily Dickinson once said, “They might not need me; but they might. I’ll let my head be just in sight; a smile as small as mine might be precisely their necessity.”

This willingness or desire to be of comfort and help to others is part of one’s character and  allowing others to fulfill that desire is part of your character. It is a difficult thing to swallow some pride and let other folks in. By doing so you are giving them a peek into your vulnerable recesses, often areas that are too painful to bring out in the light but when you do, your loved ones benefit. They benefit because they get to help you.

I fumbled my way through some of this with this hurting, defeated gentleman. He was gracious, accepting and grateful, but still broken by the burdens of a body and mind that were neglecting to serve him in the manner to which he was accustomed. I started this tale by telling you what you would have seen, but should share with you what I saw that night. As I arrived at the building’s door, standing before me was a man who amid his chaos and confusion was chivalrous enough to come hold the door open for me. I saw a man who worked himself into a state of anxiety because he could not grasp the idea that a well packed bag took precedence over the urgency of getting prompt medical care. In fact he shook his head with bewilderment as he said to me, “She won’t let me call 911 yet, but her bag is neatly packed! See what you can do.” I saw a memory of a giant taking a dark haired girl by her hands and swinging her in a circle before turning back to tend to the charcoal in his handsome new stone backyard barbeque. I saw the formidable stony face of a man approaching his sports car that was smashed against a tree in a ravine and I saw the movement of his jowl as he watched the dark haired girl whose flesh was whiter than usual walk to him unscathed from the accident. I saw the man who stood proudly and broken-hearted by his son’s casket. I saw a man who was learning how to live in a new period of his life, just like he had done before during times that were not of his choosing. I saw a man whose breathing had returned to normal pat and squeeze my hand while I was talking to him. I saw a man who had resigned himself to the fact that his wife was where she needed to be and he should go to bed. As he said, “we’ll just sit here staring until we annoy each other, there is no reason why you shouldn’t go home to bed.” We embraced. I kissed him on his forehead as I had promised his dark haired girl I would. I gathered my belongings, took the trash to the hallway, closed myself out of the apartment and went to my car in the icy parking lot. After starting the car, fastening my seat belt and adjusting the heater, I looked up at the apartment building; in the doorway, watching to see that I made it safely to my car, I saw a man.Image

Journeys

Many journeys I have taken, many lessons I have learned with each milestone my daughter has reached. When Katie was young I scoured every SPED type article I could find. Read every word and advertisement in “EXCEPTIONAL PARENT”. I learned early on that when introducing a new task or activity one should discuss it, model it and practice it. Unfortunately I am too lazy to implement each of those steps and spent most of our time, “winging it” and hoping for the best. For you to better understand my version of “winging it” you need to know that for me it meant: getting an idea, grousing to myself “How on earth could she actually do that?”, stewing over it, procrastinating on moving forward with the idea, sharing my thoughts with anyone who couldn’t run fast enough to escape hearing my litany, taking advice from the wonderful fans of Katie, presenting the idea to her, talking about every single aspect of what to do/what not do and how to react in case things go awry, then tossing her into the situation, hoping things would go well. In the meantime I would be pacing the floor with a phone glued to my ear telling everyone what was happening, then being totally surprised and happy that it all went well.

Last summer was no exception to my laziness rule. Summer water exercise class hours happened to fall on two of the days that I was working at Black Hawk Area Ed Center, not far from Black Hawk College. I thought that an excellent way to sneak extra exercise in would be for Katie to walk from the Center to the College and go to the water ex. class. Then I could pick her up when I finished work for the day. This would be her first foray going for a walk alone to get somewhere (other than walking to or from my parent’s). You must be thinking, “she has ridden that route hundreds of times, of course she will know the way.” That would be true for most people, but when one falls asleep the moment one’s bum touches the tuck and roll upholstery, whatever is passing by the windows is non-existent to the sleeper.

After getting the idea and grousing, stewing, procrastinating, and all of my other winging it phases, I sent her out the front door of the school once I had adjusted the straps of her backpack laden with swim gear. Immediately I had to share my angst with the first person I saw. Her first response was, “I can drive her there, do you want me to stop her and drive her there?”. I told her that I wanted Katie to continue, I just hoped she would make it there and remember to call me when she arrived. Bless her heart, this woman then offered to follow her and spy on her to make sure all was well! You have heard me say this before, but, people are so good!

We evaluated the areas that I thought would be problematic.

1. turning the correct direction out of the parking lot.

2. pressing the correct “walk” button on the stop light at the busy intersection.

3. after entering the pool building, steering clear of the vending machines! This, of course caused the most consternation, but we agreed, and so did the second person I dragged into my drama, that she would be so focused on her mission of getting there that she would not be tempted by the snickers and sun chips. One can alw

ays daydream, plus I decided….we decided that the experience outweighed the possibility of a vendo-gorge.

I was smugly happy with the adventure when my son phoned; my exceptionally reasonable, rational son cried, “you did what? you sent her walking by herself to Black Hawk College?!” at which point panic started to well from my toes. “Oh my gosh!” I thought, “if he thinks it is a bad idea there must be some aspect I didn’t consider.” Upon further discussion I discovered that he thought I was working at my other school for summer school and that I had sent her on a trek across town! Whew, once again I was happy with the adventure. I expected her journey to take an hour so I was pleasantly surprised and relieved when after 30 minutes she called me to say she had arrived without a hitch. Later in the day she explained that when she pushed the walk button she had to run to cross all of the lanes and still didn’t make it in time

Imagebefore the “orange man” showed up. She calmly said, “I put my hand out to stop the cars from coming at me. Next time I’ll have to run faster.”