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.

good enough.

Katie has always been difficult to buy for, for any holiday or gift giving occasion I would wrack my brain trying to come up with a decent idea of a gift for her. I always wanted to find something to make her happy, but my gifts were never food. Instead, my gifts were Uno cards, a new game, a movie, craft supplies, or music; all which she was happy about, but I never felt like I was able to give her what she really wanted. I never thought what I could give her was good enough.  Today, I think I chose good enough. Today, I understand I gave good enough.

One thing about me which was bothersome to Katie is the fact that I am a procrastinator. If taxes don’t have to be done until April 15th at midnight, I’ll turn them in at 11:55pm. When I think of something that needs to be done, I figure I’ll do it sometime this week. When Katie thought of something that needed to be done, she wanted to do it immediately.  Our sense of time, or rather our sense of the importance of time differed. Perhaps she knew tomorrow wasn’t promised, it should be done today.

So today, three months from the day my daughter died,  I filled my car with ribbon, wire, trinkets, a potted plant in a basket and a giant glittery, lavender shepherd’s hook. I drove to her grave site, well, I drove to the vicinity of her grave site. I thought it would be easy to find. I thought it would be the plot with the fresh, new, baby grass growing on it. Nope. They laid sod! I found a metal circle in the ground that read 221 abcd, I knew she was at 221 b. What I didn’t know is where those plots were located in relation to the metal number circle. There was a wooden stake tipped with red paint sticking out of the ground to the far right of the number circle. I looked carefully at the stake to see if there was any other marking on it. Nope. I carefully walked in all directions away from the stake until I found a faint sod line in the ground. I walked the perimeter of the sod line and was astounded how small it looked compared to how eternally huge and gaping it looked when her casket had hovered over it three months prior. I backed up to look at it from a different angle, I heel to toe walked the length and decided that yes, she is probably right there. Now to figure out where the headstone would be located. I suppose it would be located at the head, but if it is to line up with the others in the row, it seemed like I was standing at the foot. I decided I would put her stuff there whether I was right or wrong. I put the bottom of the shepherd’s hook in the sod line and pushed it into the soil by standing on it with my good foot while trying to not damage my injured foot. I reached up to fasten the sparkly fuchsia tulle bow to the center with pipe cleaners. The sun sent sparkles all around my head as it shone through the bow. The bright blue sky made me happy as I saw it peeking through the white rattan of the basket I was hanging. I stuck “stars on sticks” from her students in the plants’ soil, affixed various trinkets, a crown, a cross, and an angel, then I hung up the zip bag of craft supplies. Inside was yarn, scissors, and pipe cleaners with a note to friends of Katie to feel free to use those items to attach anything they might wish to the shepherd’s hook. I walked a few feet away to take a few pictures. It sparkled and shone pink and purple and was noticeable from a great distance. It was up before her birthday. She would be proud. She would be pleased.

For my daughter’s thirtieth birthday I decorated her grave and it was good enough.

For my daughter’s thirtieth birthday she helped me understand that I always gave good enough.

grave decor