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

If She Can Do It, So Can You!

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In our society you do not need a calendar to know what season it is. If you listen to the conversations around you it will be evident. During the summer the talk is of  bikini-ready bodies, flip-flops and suntan lotion. September brings freshly sharpened Ticonderogas, football games and Homecomings. Food, food and more food starting at Halloween and gracing every table, desk and counter-top through New Year’s at which time, for the next three months or for as long as their resolutions last, you cannot be near more than two people without one of them mentioning new exercise routines, diet recipes and how on earth they will ever survive their new weight loss regime.

Each of these seasons presents challenges to everyone, especially those living with Prader-Willi Syndrome. For anyone  who is not familiar, I will hop on my soapbox for a moment and explain a few of the PWS basics that affect Katie. One:  uncontrollable appetite due to non-stop hunger; an ever-present feeling of insatiability, yeah, you only think you have that. Now, pause for a moment and delve into your memory to the last time you felt real, physical hunger and imagine that as a constant during wakefulness and sleep. Two: low metabolism causing the utilization of fewer calories. By fewer, I will tell you the results of a metabolic test that she had done once showed us that her body needs only 880 calories a day to maintain. Three: Decreased muscle tone, this is what I fault for her lack of balance and coordination although that might simply be because she is the daughter of the clutziest woman on earth. Four: Back pain due to scoliosis. Now that you have had a crash course on a few of the reasons weight loss and dieting can prove to be problematic for Katie you will better understand how awesome she is.

Katie and I have joined a local Biggest Loser Contest, we are a part of 50 contestants. Although we are competing against each other every week for 3 months, I wanted to write that we are a part of a 50 member team. Through the encouragement of Josh, our “head coach” everyone is supportive of one another, we are all in this together with a common goal. I would be happy to not win any of the $50 entry fee if I could just drop some of this weight. I listen to the struggles and the plans and the confidence, or some days lack of confidence of the others and I think it is amazing to see their dedication and their strength. I know that we all come into this with our own baggage, both physical and mental baggage, but then I think of Katie, who has these extra challenges that are innate. I have the privilege of watching; her concentration as she (oh, I forgot to mention the need for insulin four times a day due to a secondary diagnosis of diabetes) calculates her carbohydrates, her calories and her insulin, her determination as she vigorously works out during a water exercise class, her perseverance as she starts her third quarter of a mile during lap swimming, her exuberance during a rockin’ Wii Just Dance session, her stupendous awesomeness while participating in and completing two 5K s. I have included photos of those incredible days. The first year that she was in a 5K was a bitter cold day, after the start off, she was alone behind the rest of the participants and from the sidelines I tried to encourage her to cut through a parking lot thereby eliminating the one and only hill portion of the race, she vehemently refused and said that she had to stay on course because she had a chip in her shoe! You will find her name next to the entry of the word integrity in the dictionary. She plodded along, down hill and up, in one of the pictures in the attached link, you will see a woman wearing the number 41. She is a total stranger who after finishing the race, ran back to the half way point to walk alongside Katie during the rest of the race. Please take special note of the time clocks in the photos, you will see that in her second race, the one with much nicer weather, she got a new PR beating her time from the previous year.

If you are one of our Biggest Loser competitors, anytime that you get discouraged or think that it is too difficult or you are faltering I want you to think of my remarkable daughter who is in this with you. If she can do it, so can you!…. So can I!

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Great River Challenge, Year Four

427954_10152124509180693_1058970653_nbballOur fourth annual Great River Challenge brought a new perspective to this parent. The joy the players experience during these games has always been very evident, but what I witnessed this year was the effect of that joy on the volunteers. We had incredible community support from the stadium, the families, the friends, the sponsors, Hy-Vee, Kohl’s, Assumption High School and Psychology Associates. On the faces of the volunteers I saw raw emotion; tenderness, surprise, pride, happiness, pure joy. I heard laughter, encouragement, cheers, and congratulations. At the end of the evening I spoke with a high school girl who told me that she had an amazing time, that she wasn’t sure if there were any players who had as great of an experience as she had that day. A father of a player shared with me that he had been involved with Challenger Little League in several different cities and that he was impressed with the support from our community, not something he had seen in the other locations. A woman who helped said that she plans to be there next year even if she has to use a vacation day from work to make it happen. The most interesting part of this to me is that I, a parent of a player, am extremely grateful for everyone who made this event possible; for the happiness, the fun, the joy it brought to our players, but this time I saw it come full circle– the happiness, the fun, the joy was experienced by the people who made it all possible. I understand that people give of themselves, their resources and their time out of the goodness of their hearts. I understand that they do this not asking, wanting, or expecting anything in return, but what I now understand is that it is not possible to be involved with Challenger Little League and not get something back. If you have a heart, which everyone who cares about CLL does, it is not possible to come away from these games without being touched.

The Wonder of Challenger Little League

Imagine a baseball game where there are no strikes, no balls, no outs. Where everyone gets to hit, everyone gets to swing until the pitcher can make the ball hit the bat as it swings by. Where the first baseman gives the batter a high five when he/she reaches first base. Where a runner steps off of second base to go to third, but gets distracted and heads to the outfield……the second baseman leaves his base to chase the opposing player down, only to turn her around and run with her to make sure she gets safely to third base. Where the spectators cheer uproariously for both teams and every player. Where the fans have hands that are red from clapping so hard and eyes that are red from tears of joy, excitement, and pride. Where parents get to sit back and watch their child PLAY with other children (often times this is the only place that happens). Where a player stops to stare at the crowd bewildered because people are calling his name and cheering for HIM. Where every movement a player makes is made with 100% effort, concentration and determination.

Now, imagine a sunny, warm fall evening with an orange sun setting in the West while a full yellow moon rises in the East. The lights of the bridge sparkle on the dark Mississippi below. The smell of hot dogs and charcoal waft through the air. The cool breeze off of the river keeps the bugs from lighting on us. Listening, you hear the laughter, the clapping, the “hiddey-hiddey-hiddey-ho” from the announcer’s booth and then you hear the distinct sound of a ball hitting a bat at just the right spot, you look skyward and see that ball sailing in a huge arc from home plate to third base. The Powerful Player who hit the ball starts running toward first, but pauses to see what the ball is doing……what that ball is doing is dropping from the sky and landing smack dab center into the waiting glove of the startled and ecstatic third baseman. The crowd goes wild, the coaches swarm the field, the third baseman’s hand stings from the impact of the ball and all of the congratulatory high fives. The Powerful Player doesn’t continue to run to first base, even though an out has never been counted before. He saw that fly ball being caught and knew without any hesitation that if anything was ever going to be an out, that catch was it………this is what happened when the last player of the game was up on that incredible night during the First Annual Great River Challenge. Amazement and awe filled Modern Woodmen284198_10150750282085693_27915_n stadium.
Iowa and Illinois Challenger teams joined to play ball at a minor league stadium. Last game of the day under the lights….exciting……

more photos: https://www.facebook.com/media/set/?set=a.274010080692.311176.552540692&type=1&l=8b314643f5