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

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

  1. You’re such an inspiration! I sent a copy of this to Jan Fazio, my husband’s daughter who is now dealing with her daughter having LAM. Another of those obscure diseases that affect so many yet so few at the same time. Both of your daughters are lucky to have such incredible mothers!

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  2. Dearest Anne, As I read your blog through my tears, I want you to know how very much I admire Katie, her Mom, and the rest of her amazing family. I have always been so thankful that God has allowed me to be a part of this whole family. I have been blessed. My prayers are always with you. Aunt Pauline.

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    • Aunt Pauline, Thank you. What a wonderful childhood I had, getting to have “sleepovers” at your house. I miss Uncle Vaughn. It is good you have remained close to us all. Much love always, Anne

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  3. Pingback: Blessings | Quality of Life MinistriesQuality of Life Ministries

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