Thank you for reading this column inspired by Katie’s birthday and sheltering in place
“Prader-Willi Syndrome”
Dispatch column #40: It’s time to champion each other.
Dispatch column #18: Help those navigating rare paths.
A real gig: Dispatch column #11 Camp fire puts Thanksgiving in the Q.C. In perspective
A real gig. Dispatch column #4: Some parents must confront hard questions about school.
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.
written: April 26, 2018. 32 years after Katie’s birth.
In the paper. Dispatch column #10 Yes, we all can change someone’s world.
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, 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 sources of 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
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
This epitaph was written for her by somebody else who loves well and is well loved.
My children – my teachers.
365 days from the death of my daughter and what do I know of grief? I know there has been wailing and gnashing of teeth. I think that is supposed to reference what hell is like. Perhaps grief is hell? The gnashing of teeth has been so strong at times I thought my head would explode. Primordial wails erupt unexpectedly from the depths of my being ending in shudders and gasps. Tears have covered my cheeks until the skin was raw and cracked. There have been times when I could not stop rocking back and forth, as though the constant movement proved to myself that I was still alive. Sleepless nights are wound together with sleep-filled days. Energy is something I marvel at and envy in those who can actually shower and dress in the same morning.
I often hear in my mind, the second beatitude from the Sermon on the Mount – Blessed are those who mourn, for they shall be comforted. This is a truth I know about grief; comfort comes in many forms, from many places. When God says he will comfort me, his methods are limitless. I think every sense has been used to bring me comfort. Smell: whiffs of fresh shampoo upon being hugged, sweet or savory scents as food being brought to the house was uncovered, calming oils in a steamy bathtub, heady floral scents from bouquets, chlorine as a locker room door is opened, sweet baby smell while nuzzling a grand baby. Taste: piping hot coffee (decaf, of course) with an ample amount of cream shared over late night philosophical conversation, Chinese entrees from every section of the menu, Mexican meals filled with laughter and finished with empanadas, licorice handed to me while I am driving, an open-ended offer to pull out anything from the fridge to the kitchen island. Sight: loved ones packed en masse in a funeral home room, tears of others who loved my sweet girl, heartfelt writings on greeting cards, a smile, unique creations in Katie’s memory, Facetime or videos with my grandchildren. Sound: text beeps, phone rings, Facebook dings all representing someone thinking of me, songs bringing remembrance of concerts and car ride radio playing, laughter. Touch: the light touch of a hand on a back, a massage, a hug, an arm to lean on, a hand to grasp, a kiss on the top of a head, tiny fingers wrapping around one of mine, an arm to tickle, little lips on my cheek, being wrapped in a cozy blanket, more hugs. He has used you all to comfort me, who mourns.
Earlier I posed the question, “Perhaps grief is hell?”,the amount of comfort I have received due to the grieving proves that can’t be true. Perhaps grief is love? If grief is caused by missing someone, someone you loved, there would not be grief if there had not been love. Queen Elizabeth I said, “Grief is the price we pay for love.” Which begs me to wonder would I give up the love I experienced to not have to endure this grief? No way! In fact, the love I knew during Katie’s 29 years makes this grief seem insignificant in comparison to such great love received and given during her lifetime.
Katie taught me endlessly from the moment she was born, but what might not be as blatantly obvious is how much her older brother, Jacob taught me along the way, too. I could list various things I learned from both of them: things like patience, perseverance, graciousness, and humility, but none of it compares with the most important lesson I learned from them. Katie, whose epitaph will describe her as “well loved & loved well”, and Jacob, who used those words to describe his sister, but they could just as easily describe him; these two children of mine taught me love. One would think a mother would simply, intrinsically know how to love. True, there is that mushy, loving feeling which happened right upon my first sight of my babies, but the love they have taught me is the love which sustains life. A love which gives purpose to life. A love meant to be spread to everyone you meet. The love they have taught me is love fresh from heaven. These two children of mine love in the way I imagine Jesus loves. On this day, the first anniversary of Katie’s death, Jacob made a project honoring her. It was filled with love. It taught me what grief is. Earlier I wondered if grief was hell. Then I pondered that it might be love. I now have the answer. Grief is love. Grief is most definitely love.
And you know what? I can live with love.
click on these words > Jacob’s project on youtube, you’ll want to see this
To know me, is to know the real thing.
Due to a domino effect of used refrigerators trading places, we now have, in our kitchen, a refrigerator that has never had a lock. It sat empty for five days like an alien life form that was a complete mystery. I was unsure how to approach filling it. There aren’t Katie drawers. No insulin or Bydureon rattles around in the “butter” compartment.
275 days into this life of grief, I still buy too many fresh vegetables and yogurt nobody ends up eating. Trips to the grocery store find me standing in front of a shelf not having any idea what to put in my cart. More then once I have walked through the store, pushed my empty cart back into the rack and driven away with nothing in my trunk. One day the butcher found me in such a reverie he said he almost jumped over the case to see if I was alright when I was not responding to his inquiries.
I don’t tell you this looking for pity or sympathy. I tell you so you know the real thing, the real me. I have this firm belief that it is important to share with others the lows as well as the highs. I think it might help somebody else to know what I am experiencing; it might mirror something they are enduring and help them to know how another feels, or it might help somebody who in the future will be in my shoes, or it might simply help you to know me better. To know when my participation in a conversation is non-existent, or distracted at best, that my mind doesn’t always focus or concentrate on what is being said or what is happening around me. Also, I tell you this because you endured all of my griping about the damn locks. You listened and comforted me when I complained about Kathleen‘s stupid syndrome. You knew it was never the inconveniences to me I was bemoaning, but the tragedy of a girl always being hungry which was my cause to wish for a day I could have a refrigerator without locks. I have one now, I wish it was due to a cure instead of a death. Even without locks, at my house, we are still hungry for a cure……
~~“What we hunger for perhaps more than anything else is to be known in our full humanness, and yet that is often just what we also fear more than anything else. It is important to tell at least from time to time the secret of who we truly and fully are . . . because otherwise we run the risk of losing track of who we truly and fully are and little by little come to accept instead the highly edited version which we put forth in hope that the world will find it more acceptable than the real thing. It is important to tell our secrets too because it makes it easier . . . for other people to tell us a secret or two of their own . . . ” buechner
Devour My Words 