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.Image

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