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

17992281_10158585809665693_8317758238990448851_n

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

17498798_10158412847525693_2322054873053684567_n.jpg

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

Advertisements

My children – my teachers.

cslewisgrief365 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 this12809581_10156571907685693_3816945146187050730_n

To know me, is to know the real thing.

14725582_10157611300170693_6112392010538025485_n 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

…because there is a game called baseball.

1044804_10157460851685693_6320147923639862454_n

I wrote. I deleted. I pondered how to write a post about Challenger Little League’s 2016 Great River Challenge less about me and more about others. I wanted it to be about the passion of the parents, the exuberance of the players, the eagerness of the volunteers, and the glory from the fans. I found out I couldn’t discuss this day without it being about me.

As this day was looming in front of me on the calendar, I had much trepidation about attending. I have always had a purpose for being at these games. I had a daughter who was a player and I had a function to fulfill during the games, but this year I had neither. For anyone reading this who is not aware; my daughter, a Happy Joe’s Challenger Little League player, died unexpectedly earlier this year. She loved being with her friends and playing America’s game, especially on the River Bandit’s diamond. The league has been tremendously supportive of us, for which I am grateful. Yet, I was fearful of attending this event. I suppose I had fear of feeling envious of the other parents who had children playing, fear of feeling useless due to not participating in my usual capacity, fear of feeling alone without my daughter playing, and fears which are too dark and deeply hidden to bring to the surface to try to analyze or share publicly.

The day of the 2016 Great River Challenge games was the perfect Mid-western September day. Even though storms had been predicted, we ended up with white puffy clouds in a blue sky which reached down to meet the lush green field and the smooth river reflecting the same clouds and the arches of the bridge.

Hearing the chatter of the players as they walked through the fence, onto the diamond at Modern Woodmen Park was delightful. The excitement to be playing ball in that special place rang clear, but this year I noticed a different excitement. I am sure it has always been there, but I was seated closer to the diamond and had a different perspective which allowed me to notice. What I saw was friendship and camaraderie between people. Coaches were kindly giving instructions to eager volunteers. I watched players giving hugs to other players or high-fives accentuated by giant smiles to coaches. I experienced hugs, smiles, and tears from players who had not seen me for a while. They remembered me. They remembered and missed my daughter. Nothing could have moved me more. I felt ridiculous that I had feared returning to this, to these players who are the bravest people I know. These athletes face fears everyday that put my fears to shame: fears of isolation, ridicule, physical pain, hunger, and of not being able to do things so basic that you and I don’t even realize…well, some of you do realize, because you are their parents. You, their parents are the second bravest group of people I know and you just keep doing it all because that is what needs to be done. You, the parents have not only supported me through these past months, but for all of my years associated with Challenger Little League. Golly, the past twenty-four years. You, their parents welcomed me on the day of the Great River Challenge. You welcomed me with smiles, hugs, and tears showing me where these players learned their compassion, and showing me that CLL is more than a sport, more than a pastime; it is a family. It is the family of Challenger Little League. We are a family of folks related by the common bond of our children. We are siblings who have grown up together, just as our children have. We have learned from each other and leaned on each other over the years, and just as my blood siblings reminisce at holiday gatherings, we have stories to tell when we are together. Memories of our growing years, of our children’s growing years and no matter who is missing from our family we will always have those memories. Memories we get to cherish because there is a game called baseball.


This is just a drop in the bucket of what I could tell you about my perspective, about my gratitude, about my Challenger League family. With a gratitude that moves me to weeping, I thank everyone responsible for this glorious day for the bravest athletes I know.

Wish!

14364911_10157408278650693_3226048177388631353_n.jpg

For more than half of my life as I blew out my candles, I only had one wish. I wished for Katie to no longer be hungry.This was my constant wish, not just for candle-blowing time.  Now she isn’t. My wish came true, not quite how I had imagined it would, but it came true. Tonight, at age 57 I needed a new wish. It came to me quickly. I wish everyone would have the opportunity to fully understand how much they are loved. It is a humbling feeling, one which will have you thanking your lucky stars, Almighty God, or your deity of choice. Every day since Katie died earlier this year, I have experienced love, care, and generosity from family, friends, neighbors, and almost strangers. There are so many people I have not yet thanked, so if you are reading this and have heard nothing from me, please know I am eternally grateful for whatever you did or provided for me. The magnitude of the love is overwhelming and inconceivable. It is also completely palpable. Grief is the hardest thing I have ever done. I was completely unprepared for grief. I have often stated, and still believe I have been in mourning since Katie’s birth. I mourned the child I expected her to be, the child I had planned on having and raising. She wasn’t who I was anticipating. That form of mourning did not prepare me for the slap in the face, punch in the gut mourning in which I am currently engulfed. I vividly remember the lecture and book by Kubler-Ross, but I don’t remember ever once being told how physical the grieving would be. I know I was never told that somebody who loves me would do my laundry or dishes or carry my purse and open my doors because I simply have no strength. Often I feel like a pile of tar in the middle of a Disney World parking lot on a 110 degree day. The Disney World reference is intentional, because I often think the rest of the world is running on Disney happy place steroids…..while I am the tar. People have been able to temporarily love me out of the tar state. Love has been made visible to me. I don’t wish the death of your child or any other calamity which might be the opportunity for you to realize the depth of love others have for you, so instead I wish you would be open to love whenever it knocks on your heart. Watch for love. Recognize love. Accept love. This I know…wishes come true. Allow yourself to be loved. Allow others to love you. It is, after all, my birthday wish.

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

Leap Day, Katie-style

little katie

 

 

Katie was always fascinated by Little People. She adored “the tiniest dwarf” and the Roloff family on television, but I believe this affinity began when she was in early elementary school. She was little for her age and would hear me explain to people that short stature is a Prader-Willi Syndrome characteristic. She would also hear her father’s family tell about how short their ancestors were; I believe her paternal great grandmother was reported as being 4’8″ or 4’10”, I don’t remember which, but definitely short compared to my family. She was wearing size 3 dresses when she started Kindergarten, so she frequently heard comments about her diminutive size. Sometime after age six, she encountered her first little person. He completely captured her attention. She watched him unabashedly, contemplating how his small stature didn’t seem to accurately reflect his apparent age.

After studying him sufficiently she turned to me and asked, “Do you think he comes from a family where everybody is small? Or do you think he was born on Leap Day?”

Barely choking back laughter, I sputtered, “What? What do you mean?”

With the patience only Katie had, she calmly repeated with more explanation, “He is little. Do you think his whole family is little, like how Dad’s Grandma was little or do you think he was born on Leap Day?”

“I don’t think his whole family was little. What do you mean about him being born on Leap Day?”, I was still perplexed by that part of the question.

“Well,” she began explaining, “if his whole family isn’t little, I figure he must have been born on Leap Day because he is old looking,  but he is still so short that he must not have had enough birthdays to grow big.”

I will never live through a Leap Day without thinking of this delightful conversation and without remembering how Katie loved people, but most especially little people.