Dispatch column #40: It’s time to champion each other.

Please click here to read in the Quad City times. Thank you.

Please click here to read in the Dispatch/Argus. Thank you.

Dispatch column #18: Help those navigating rare paths.

Please click here to follow the path. Thank you from everyone with a rare disorder

Katie’s birthday tribute 2018

A truth has been revealed to me. I AM KATIE’S MOM!

I became Katie’s mom 32 years ago today. I was her mom then and I am her mom now. When she died two years ago I didn’t realize I could still be her mom even though she is not here.  At that time I felt I had lost much of who I am. I lost my identity when I lost my daughter. My mother once described it as losing even more, she said, “losing Katie is like losing a big chunk of our own bodies, bigger than if we had lost an entire arm”.

It was recently pointed out to me that I am able to mother her still, not only while she was alive, but also in death. That is earth-shattering to me. I am not sure what that will look like, but I think since her death I have been mothering her by sharing her story. Her story did not die with her, it is up to me to share her life, her death; her effect on me and on you.

She taught us so much while she was living, and has taught us even more with her death. The lessons are the same. I learned about grace, perseverance, patience, and courage by watching her struggle with delayed milestones, bullies, ever-present hunger, and frustration. I am learning how to live with my new struggles. An example is how I have called upon her lessons to get me out of bed every morning. Once I decide that I must get out of bed, I put one foot on the floor, then attempt to get my other foot close to the floor. I’m still supine with my head on my pillow but bent at the waist to a near ninety degree angle (much like a broken Barbie doll chucked aside for a newer version) waiting for the strength to hoist my body upright, which I know I can do because I am a warrior! I am finding my new identity. I am a broken Barbie doll warrior. I am the teller of Katie’s story. I am Katie’s mom. I was her mom and I will be her mom until the day I die.

Today, I celebrate Katie’s birthday by becoming her mom once again. I’ve missed her.

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written: April 26, 2018. 32 years after Katie’s birth.

 

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.