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

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Things I have learned living on the periphery of hunger for 26 years.

Twenty six years ago was the first time I had ever heard the words Prader-Willi Syndrome. I have lived with Prader-Willi Syndrome ever since. I am not afflicted with it, so I feel I only have the right to tell you what it is like to live on the periphery of it. Its hunger does not consume me, I only see how it consumes my daughter, with whom I live. She lives with Prader-Willi Syndrome and I float along the edge of it doing whatever I am capable of to make her life easier. She turned 26 years old April 26, 2012. She is the same age I was when she was born.

I look at the 26 year olds I know and am shocked  their bright-eyed optimism and innocence was mine until 4/26/86. We made it past the 18 month mark and the teens, both landmark ages we were warned about at the time of diagnoses.  There has been laughter and tears, more often than not they have been simultaneous. Which is why I agree with Truvey from Steel Magnolias, “Laughter through tears is my favorite emotion” : ) I marvel at so much I have learned along the way. So much I cannot even explain.  What I know for certain is “no man is an island” and life is easier because of that. I would not have survived without all of you, my family and friends, the amount of your love, compassion and support are beyond my scope of comprehension.

“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 Buechner217184_10150578090445693_8118940_n

Can you think of anyone who lives each day with awareness of
how precious it is?
How often do we take the time to realize the significance of each day?
Something in each day has an effect on who we are and how we affect the lives of others.
If we would be cognizant of that fact and of how precious each moment is, would we do anything differently in a day?
Would we be able to live through it?
Some days seem more precious in our memories than others.
Some, more significant.
This day, April 26Th, 1986 was the
most precious,
most significant,
most defining
day in my life.
A day which shaped all of
my tomorrows,
that day formed the
woman I am today.
That day ushered out
the self-centered,
righteous, pompous me
and welcomed me into an adventure
that would teach me
humility,
faith,
agape,
perseverance,
patience,
gratitude,
tolerance,
hope,
and one of the most difficult of all things;
the ability to accept the
generosity of another,
to welcome their kindnesses.
I’m not sure why it should be so difficult,
but even after all these years, it is.
I don’t know if it because accepting
the kindnesses of others, exposes
the fact I am so very needy and vulnerable…..
perhaps that is the reason.
I think the reality of the difficulty
of accepting another’s kindness
comes mostly from the awareness
of how precious it is.
As Buechner says, ” if we are aware, we could
hardly live through it.”
So, when you are being ever so kind to me,
as is so often the case,
please understand
I am choking up, puddling up, or straight out
bawling like a baby,
because
I can hardly live through
how precious your kindness
is to me.
On this date in 1986, I unwillingly joined
a sub-sect of society I wanted no part of.
I became the parent of
a “special needs” child.
Today- this day like no other,
I am thinking of the incredible young woman
my child has become.
Today- this day like no other,
I am thinking of me and trying
to be aware of how precious each
day is.
Today – this day like no other,
I am thinking of you-
and how precious you are to me.
Thank you.
Katie’s mom –Anne