photo credit: see highlighted portion of photo.
photo credit: see highlighted portion of photo.
I had all the car windows open and the radio blaring as I was approaching the Bagnell Dam Bridge. My hands began pounding the steering wheel as I shouted, yes, I SHOUTED, “omg! Omg! OMG! I’m here, I’m here, I’m HERE! Alone!” The fact that I was approaching the Bagnell Dam Bridge is probably totally irrelevant. I could have been approaching any place other than home and I would have had the same visceral excitement engulf me.
I had just dropped my daughter and our two friends off at a camp in Missouri that devotes an entire week to people with Prader-Willi Syndrome. PWS is a condition which requires constant vigilance on the part of the responsible party in the household. Twenty-four hour supervision is needed with policing of any morsels of food in the house. Sure, the cabinets and refrigerator are locked, but for the brief moments that they are unlocked during meal preparation, items can quickly and stealthily go missing, so I sleep with an ear to the door listening for mid-night raids of hidden stashes of goodies. All this being told to you to explain my exuberance at having some much-needed and long overdue “me” time.
As soon as the plan to take her to camp and to stay nearby for the week formulated in my head I began researching resorts on the Lake of the Ozarks. Price, of course, is always my most determining factor with second on the list being a decent swimming pool. Even though I would be on a lake I wanted a pool so I could swim laps. I had a resort picked out simply due to price and pool and thought it looked very wild which did not appeal to me. I was looking for serenity and restorative peace. I came upon a place that featured a nice looking rectangular pool at a reasonable rate, including a month of June discount, I phoned and spoke to the proprietress telling her that I had been reading other advertisements that showed lots of activities, bars, and restaurants all on site. She stated that if I was looking for that type of activity hers was not the place for me to stay. That statement cemented my decision that I had found the perfect resort at which to stay. I had an adorable little one bedroom unit with a kitchen. The balcony had a bistro table which overlooked the pool, docks and lake.
My first Ozark morning after a winter of not swimming laps,( just water ex classes) started in the pool (well, AFTER a cranberry scone and a cup of decaf Gevalia coffee turned into a mocha with the addition of cream and Russell Stover chocolate!) and am quite impressed with myself.
I swam sets in increasing increments with a 45 second rest in between and stopped at 140
thinking that was a decent workout, then followed it up with 1/2 hour of ai’ chi.
I returned to my balcony for breakfast round two, a bowl of luscious berries, almonds and creamy Greek yogurt. The proprietor walked by so I inquired about the length of the pool and found that it is 12 yards which means that 146 laps is a mile, my instinct had me at just 6 short of that, not bad.
Anyway, my plan was to write this while eating breakfast round two, but my computer battery was dying, so I carried the laptop and camera inside. As I stepped inside, I received a phone call.I didn’t want to sit on any furniture in a wet suit so I shimmied out of it and just then realized I had forgotten breakfast round two on the balcony…..I knew I SHOULDN’T be naked to go out and get it, but was unable to get dressed without the use of both hands and my conversation was taking priority, so I left it for later. After we hung up, I threw on a long shirt and went out for my food….but a squirrel had beaten me to it!! There is a sign on the inside of my unit door that says “Please don’t feed the ducks”, I think they targeted the wrong critter. If a squirrel eating my breakfast is the biggest stress of the day, I will happily feed him daily. Come back for more Ozark Observations. The pool is again beckoning.
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!
Katie VandeMoortel, 2007 Ms. You Can Do It! says that her Challenger League baseball coaches helped her win the title. They taught her to calm her onstage and interview jitters by taking a big, deep cleansing, relaxing breath just like before getting up to bat at a game. The pageant experience provided her with an opportunity to meet and interact with other girls. She loves coming back to the pageant and she looks forward each year to seeing the friends she met during her pageant years. She has been inspired by the other contestants and by all of the people who volunteer to make this pageant a night of magic. She is employed as a feeding aide at Black Hawk Area Education Center. She is a member of the Happy Joe’s team for Challenger League baseball and participates in the Great River Challenge. Katie has been active in Young Life’s Capernaum Next Step and has volunteered twice at “work weeks” to prepare a camp for hundreds of high school summer campers. Katie is a volunteer at Sacred Heart Church in Moline where she is a money counter. The determination, focus, enthusiasm and persistence that she exhibited during the pageants is evident in her daily life as she battles the effects of Prader-Willi Syndrome. She diligently works out at a water aerobics class at Black Hawk College, where she also swims laps like a fish and has a personal best of 3/4 of a mile in one hour, that’s really kicking it! Just Dance 2 for Wii provides her with hours of fun, aerobic exercise. Kathleen walks at home on a treadmill and hikes at Prospect Park, finding that using hiking sticks gives her a boost. She bowls in a Thursday night women’s league. Her favorite activity of all is being Aunt Katie to her adorable nephew Cohen and sweet niece Sophia and making them extraordinaryily creative birthday cakes. Kathleen’s enthusiasm for the pageant has encouraged many of her students and fellow baseball players to participate in the pageant. She is anxious to bring her crown out of it’s box and return to Utopia for a night again this year.
A perfect sign happened to be hanging behind her for this photo.
Along with Cohen and Sophia, Katie is aunt to Ellie Joy.
Katie has attended Wonderland Camp’s PWS week three times and always wishes that it lasted longer.
Katie died peacefully in her sleep January 25, 2016. She would have been 30 years old in April. She wore her MYCDI crown to her visitation which was unbelievably attended by over 800 community members who mourned Katie lovingly. She is remembered and missed constantly.
Two loves she did not get to meet, niece Mae Anne and nephew Everett Paul were expected to be born on her birthday, but arrived April 14, 2016
I was told the good friends at the MYCDI pageant 2016 took a moment to remember Katie. I was deeply moved to hear that happened.
Katie will be mentioned in a Jenni Pulos article for the Parade magazine featuring MYCDI.
Katie’s brother, Jacob penned the perfect epitaph for his sister. Something a brother should never have to do, but he has always done things for her that no brother should have to do. He, too, loves well and is well loved.
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Our adoption story
My journey as an adoptee who found her birth family.
Aspergers and the loss of my son
A small taste of life on the fringe of Prader-Willi Syndrome
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