Celebrate!

How does one celebrate life? In 1986, while I was pregnant I had ideas in my head of what my new baby’s life would be like. I had the fear of bringing a child into a world where the new ice age was still being predicted and the Russians could attack us at any moment, but pregnancy in and of itself proclaims optimism. Every time a person is pregnant the possibilities for potential are mind boggling. What will this life inside me do? Will great scientific discoveries be made? Medical advancements? Compassion to all one encounters? Will this baby know joy and laughter? As a mother, I wanted a grandiose life for this new baby. I wanted him or her to follow in the big footsteps of the older brother, Jacob and make us a perfect little family of four with a goldfish in a bowl and the hope of a dog in the future.

April 26 brought us a beautiful, silent bundle of pink whose life was not going to follow my grandiose agenda. During the days following her birth we were told we would possibly never be taking her home. And then told, she would go home, but we should expect quick deterioration ending in death within eighteen months. When the final diagnosis of PWS was given we were told she will live in constant hunger resulting in probable death in her teens. My world was shattered. I went from producing a child who would change the world to producing a child for whom I could not even satisfy all of her basic needs. I could clothe her: golly we did that!! the amount of pink in our house was like a cotton candy machine at the fair. I could shelter her: cozy and snug in a room with her brother in a house containing a nest of seventeen baby mice hidden in the bowels of the sofa. But the final of one’s three basic needs would never be attainable for this mother, I would never be able to keep her from being hungry.

I am using what would have been her 31st birthday to celebrate her life. I find that although I never, ever squelched her hunger, she had the grandiose life I had once dreamed would be hers. Scroll up and re-read what my hopes for that unborn child had been. She accomplished all of that and so much more. Her life exceeded my plans.

Great scientific discoveries? You know it! New methods of stretching and staining the bands of chromosomes. By age two she had already reached one of my dreams.

Medical advancements? Rock it, Katie-girl! Years of rigorous physical testing and daily injections by my brave girl helped to make growth hormone a common treatment for certain symptoms of Prader-Willi Syndrome.

Compassion to all one encounters? It isn’t often you meet somebody who never speaks ill of anyone. Of anyone. At her funeral a school mate of hers told me a story about how Katie had stood in front of one of the boys who had bullied her for years and told him she forgave him.

Joy and laughter? Abundant joy and laughter. Catching the biggest trout, getting a wild-draw four card in Uno, Cohen’s sweet baby face, Sophie splashing in her arms in the pool, Ellie patting her belly, Jacob dressed in a suit serving tea at her dress-up party, teasing about her social life from Coach, being able to recite all the things which made each of her students happy, just a few examples of all her joy and laughter. Planning her birthdays with Grandpa Jake was a huge source of delight. This year they get to celebrate together again.

Her life shattered my world. I hope you have someone who shatters yours. Someone who shows you how precious every moment is.

Celebrate.

Celebrate preciousness.

Celebrate life.

Happy birthday, Dad and Katie.

“Celebration is only possible through the deep realization that life and death are never completely separate. Celebration can only really come about where fear and love, joy and sorrow, tears and smiles can exist together. Celebration is the acceptance of life in a constantly increasing awareness of its preciousness. And life is precious not only because it can be seen, touched, and tasted but also because it will be gone one day.” ~ Nouwen

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Katie’s gravelights were a birthday gift from somebody who still loves her. Pink and purple solar powered fairy lights. 

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.” ~Buechner

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This epitaph was written for her by somebody else who loves well and is well loved.

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