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

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Wish!

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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.

 

Most Exciting Milestone!

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*suck from a special nipple- 5cc at 6 weeks
*lift head from surface while in prone position – 20 weeks 1 day (my birthday!)
*removal of gastrostomy feeding tube -8 months
*chromosomes used in research which successfully resulted in a new method of stretching and staining the bands which means more accurate diagnoses – 1 year
*sit – some of these require that I locate her baby book
*first tooth-
*pull to stand-
*crawl –
*walk – somewhere around 3 years

As I attempt to write about these early milestones, I notice that the milestones most parents fret about must have been inconsequential in the scheme of her life. I have no recollection of when they occurred. As you can see though, I remember the ages she did things that other parents would not know were momentous events. Sucking and neck strength, most of your children had these skills the day they came home from the hospital. Every time I hold a newborn I marvel at the strong neck holding up its heavy head and remember the games and histrionics we performed to encourage Katie to lift hers. Tears well in my eyes when I hear a baby suckle at a breast and my memory turns to the sweet nurse who was brave enough to break through my “I must keep pumping – breast is best” barricade to grant me permission to stop. She had witnessed my relentlessness in attempting to bring forth milk from breasts whose only stimulation came from the “swoop-swoop” of an electric pump. I drank copious amounts of water and was never a second late hooking up the pump. I would sit alone in the “Mother’s Room” rejoicing if any dribble of milk appeared, but mostly I grieved the moments lost with my precious child while I wasn’t in the nursery. I slurped my water, the machine swoop-swooped, and my heart pounded through my chest while I wished I was near enough to see and touch her. While we drove the 90 minutes each way to see her, I splinted my abdominal incision with a pillow and ignored the pain brought on by each bump in the road. Pardon me, I lapsed into a story for another day, but you can see why I didn’t want to spend any of my moments in Peoria without her…. back to milestones.

One thing I learned very early on was that things happen when they are supposed to happen. I can encourage, cajole, wish, hope, pray, stew, worry, pace, cry, bribe, demand, threaten, and give up; all to no avail. None of these things will make any difference if the time is not right. Encouraging and cajoling will help bring the child to the milestone. Hoping and praying will bring me peace and comfort during the wait, but always the most important part for keeping sane is to know that  “I am not in control”. I find that to be a relief. I realize that if the milestone is never reached it is not due to my lack of trying or through any fault of my own. I am not in control. This did not give me a free pass to not try to help her reach the milestones, it simply made me realize that if I did my best, everything would happen as it is supposed to….when it is supposed….IF it is supposed to happen.

When I learned about Prader Willi Syndrome’s bizarre characteristics. My main concern was that my child would always be hungry. In Social Studies we learned that the three basic needs of civilization are food, shelter, and clothing. Knowing that I would never be able to squelch the pangs of hunger of my child left me feeling inadequate as a mother, unable to provide an essential need. Elimination of the hunger has been my fervent prayer since she was four days old when we were alerted to the possibility of PWS. I have always hoped that modern medicine would accomplish this in her lifetime. I never expected to see it during mine. Her gila monster spit medicine(<ahref=”http://http://vandemom2.wordpress.com/2014/06/01/rescued-by-a-gila-monster-and-the-creativity-of-scientists-we-hope/“></a>)
might not be the full monty, but it surely is the closest anyone has come thus far.

I was at work and Katie was with her father after spending the day with her grandmother and various aunts when she sent me this text:

July 22 5:35 pm

what should i do dinner i went tramimu because aunt chris want to show aunt mary is good she had a bad one last night and not very hunury had bumch salad what should do

TRANSLATION of the words, not the punctuation what should I do for dinner, I went to tiramisu (a restaurant) for lunch because aunt chris wanted to show aunt mary that it is good because she had a bad meal there last night, so I am not very hungry because I had a bunch of salad ….what should I do?

BEST TEXT EVER.

A milestone I never thought I would see.

Alone in the Ozarks: part one of a series: “While Katie is at camp”

Several years ago a friend told me about a camp in California,  where his daughter was working for the summer. He contacted me because he was excited to tell me that they devote an entire week to Prader Willi Syndrome. Knowing  it was a pipe-dream to think I could get myself and Katie to California, I hit the internet instead. A year ago I found Wonderland, Wonderland Camp in Rocky Mount, Missouri. Week long camps for people with “special needs” are held throughout the summer, but one week is specifically for people with Prader-Willi Syndrome. I was so excited. I signed her up for camp and researched nearby resort options for me. My goal was to find an affordable room at a place with a decent pool. I made price the first priority and found a place with a decent price and pool, but realized that my room would be located above the resort bar and that the large resort had continuous activities planned, it sort of reminded me of a KOA campground only with buildings instead of campsites. I was looking for a much more peaceful, serene environment, like a state park campground; my main goal was to pamper myself, swim, and sleep. I found another place that looked like it would fit my requirements, when I spoke with the proprietor she confirmed that if I wanted a lot of activity I was looking at the wrong resort, I immediately booked my reservation. It was a wonderfully relaxing five days. I slept. I swam. I got rejuvenated. I vowed to do this every year.

This year I made Katie’s camp reservation and called my resort. They booked me in the same room and I sent my deposit. I started selling scarves, jewelry, and cards to provide the means of getting us to Missouri. We saved our Christmas and birthday monetary gifts and, with the help of family and friends, we scraped together enough to cover her week and mine.

For those of you new to our life, you need to know that PWS is a condition that requires diligent twenty-four hour supervision and monitoring of food, as people with it are constantly ….that means, ALWAYS and FOREVER hungry. This is why the camp has them come on a seperate week, so they can cater to the specific dietary restrictions that are necessary. This is also why….. I need a break!

One would think that with constantly dealing with what to eat when, that food would be the furthest thing from my mind when I am not with Katie. I thought that would be the case, and was surprised when I realized that it is so ingrained in my being that before the trip I thought, “Where are the grocery stores? What should be my menu for the week? What staples should I take with me?” I told myself to stop thinking about the food, it was going to be irrelevant for an entire week. I could eat whenever I chose. I could…..gracious sakes!!!…… skip a meal if I wanted! I could have breakfast at 4:30am (yeah, like that would ever happen!) and lunch at 2 pm without anyone noticing the time span. I could have a sandwich and call that a meal without adding cucumbers, tomatoes, peppers, onions, radishes, and every other conceivable vegetable known to man.

So, what do I do? I still think about food. My first blog post about my vacation could have described the serenity of no obligations, the peacefulness of no responsibilities, the wonder and majesty of a lake made by damning a couple of rivers……but, no. Staying true to myself, it is about food. Some of my food interest is not related to Katie, some of it comes from my ancestry of German farmers who still battle over who makes the best German Potato Salad at a picnic. The correct answer is, “mine”. It doesn’t matter who you are talking to, if they made German Potato Salad and you asked if they tried the others and whose was the best, the answer will be, “mine”. Just to clarify, I must tell you that mine is the best! As a young mother I canned fruits, tomatoes and homemade jams until PWS entered our lives and I didn’t know how to make those sugar-free. I think it is a benefit that I am passionate about food, cooking, and learning new things. That passion has helped make me adventurous in the kitchen so I could create interesting low calorie, low fat, low carb, high volume meals. The unfortunate part about my food passion is that I like to eat it all. I have a distinct memory of being told what Prader-Willi Syndrome was. In that moment I thought, ” it is such a bizarre condition that I doubt people will believe it is real when I tell them about it,  they will think I made it up as an excuse for obesity”. At that time I weighed probably 140 pounds or less but decided then that I would not let myself gain weight, because I didn’t want people to think that Katie was obese because her mother is and it is simply our lifestyle choice. It grieves me that I was not diligent about that. There are far too many psychological theories that factor into my obesity for me to bore you with that line of thought, but I am glad that PWS is getting more awareness which makes me sound less of a looney tune and more legitimate than I sounded in her early years. My legitimacy is certainly not the main reason I am happy about the awareness, merely a by-product.

I dropped Katie and the twins off at camp, checked into my room and went grocery shopping, I went to two stores so that I could find the kind of coffee I was looking for. I stocked my fridge and have eaten without regard to a clock. What would be in your fridge if you could eat whatever you choose?

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Yes, that is a lot of cheese, but it was a good sale, I can take it home. The margaritas are in there because I was anticipating a guest, I thoroughly enjoy margaritas, but the tequila puts me immediately to sleep…….or makes my clothes fall off…..or both!

Brunch on the Balcony: part two (part one has not been published, yet) of a series: “While Katie is at camp”

brunch on the balcony

I am greedy and have not shared my lovely meal, the critters are not happy with this turn of events.

Before me sat a cup of steaming Gevalia decaf with a touch of honey and cream; crunchy, seedy toast topped with Michelle‘s sweet red-raspberry jam; plump, chilly black grapes, and a piping hot omelette made with spinach, portobello mushrooms, vidalia onion, red pepper, bacon, ricotta and cheddar cheeses. I sat in my swimsuit and sarong, (because why would I wear anything other than that?) decided that I needed to scootch just a little bit in another direction to optimize my lake view…..scootching is NOT reccomended in plastic lawn chairs!! As I attempted this, two chair legs folded underneath and catapulted me off of the seat. Did you see “Identity Theif”? Remember the part where Melissa McCarthy gets hit by the car? She is hurled over the hood, against the windshield, onto the concrete and everyone thinks she is dead……yeah, that was me after being launched from the chair! I rolled, yes, actually rolled multiple times before landing sprawled on the deck with my sarong wrapped haphazardly around me. I untangled myself, gingerly arose to a sitting, then kneeling, then standing (only with the support of the nearby A/C unit) position. I hobbled over to pick up my upturned chair while thinking, “Oh, crud, I have to tell the proprietors that I broke their chair!”, as I upended it I realized it wasn’t broken, after all. I am currently seated in the wretched thing, the legs had merely folded under. My lumbar region is not happy about the incident, as I was already living on an injury from last week, but….on the bright side, the nearby squirrels were too busy chattering and giggling about my predicament to pilfer my food!