December 2013 – Devour My Words

My title is a quote from Anthony J. D’Angelo.
It is an attempt to explain a very basic, simple thought. I know it will sound convoluted and complicated, because that is what the process looked like 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, ever-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. I needed to learn another lesson from my daughter and she readily, yet unwittingly educated me. The melancholy was my issue.

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.) Even though she was disappointed to not find the food she was looking for, her memories of the holidays were not tainted by the disappointment.

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.”