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

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.”

~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

August 7, 2013 by vandemom2

Recognize the preciousness, weep.

“In the entire history of the universe, let alone in your own history, there has never been another day just like today, and there will never be another just like it again. Today is the point to which all your yesterdays have been leading since the hour of your birth. It is the point from which all your tomorrows will proceed until the hour of your death. If you were aware of how precious today is, you could hardly live through it. Unless you are aware of how precious it is, you can hardly be said to be living at all.” ~Frederick Buechner

I am so often aware of how precious our moments in life are. Buechner is right, I can hardly live through the awareness of the preciousness, it leaves me frequently in a weeping state. I have referenced this statement of his before and probably will again because it so moves me. Today my weeping began when I was the recipient of extreme compassion by a woman who could have easily remained disconnected, aloof or unaffected by my story. She had nothing to gain by encouraging my discourse and it was not part of her job description to show me such kindness. It was part of her generous spirit to involve herself and share of herself. Because of her willingness to get involved my heart was touched. She asked probing questions and presented me with various options for dealing with the situation, all while completing the duties she needed to accomplish. Instead of sitting bare-assed on a doctor’s exam table I felt like I was sharing coffee with a friend at a painted kitchen table with zinnias and sunflowers outside of the window, this is how comforting she was. If I was capable of bestowing some sort of Nurse Extraordinaire award, she would be the recipient.

I had so many people showering me with kindnesses this day that my tears were more of a shower than the relenting summer rain.

~A kindred spirit with whom I share the bond of each of us having daughters who need a little extra from us as mothers, and the bond of loving life and choosing to extract every ounce of pleasure and happiness it offers.

~My beloved sister whose thoughtfulness and generosity escape from her with every breath she exhales.

a friend whom I have known since Kindergarten making a comment on Facebook that felt more like a hug than a social media entry.

~ An old friend whose emails bring me laughter and comfort always.

~A fellow swimmer inquiring after my daughter’s well being.

~A friend whose door is always open with love and peace waiting just inside the door.

~A non-person entry to this list, a fiery sunset sinking into the river after the rain subsided.

We all want to be complete, strong and courageous, so anytime I realize that I am actually broken, vulnerable and needy I am grateful to those who build me up, hold me up and shore me up with their extreme acts and words of kindness, thoughtfulness and compassion, whether they are a person who does that on a daily (some days hourly) basis or if they are a person who briefly touches my life once or twice a year.

All of you make my days so very precious that I can’t help but be aware. I am living.