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.
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
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.
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?
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!
My title is a quote from Anthony J. D’Angelo.
It is an attempt to explain a very basic, simple thought. I know it will sound convoluted and complicated, because that is what the process looked like for me to recognize the magnitude of its simplicity.
Many people in my life have been instrumental in helping me to see “You only know what you know”. This statement has been used to help induce slumber during countless, sleepless, maternal guilt-ridden middle of the night hours. I have stretched that to mean: You can only do what you know, if you had known any differently at any given time, you would have acted differently due to that knowledge….but, and it is a capital BUT, you didn’t know, so your actions were only based on what you knew at the time. Ah, that thought allowed me to sleep and not flog myself repeatedly over my motherly mistakes. In that respect it has served me mightily, but now I have discovered that it isn’t fully true. I now believe that I don’t really know what I know, what I know is only my own perception of knowledge that I have acquired. You have perhaps acquired the exact same knowledge, but what you know is different from what I know because we each perceive the information differently, dependent on all of the individual experiences we have lived. Our past experiences and the emotion that those experiences have embedded in us determine how we perceive everything else. This means when there is something that I might get really excited about or really worried about, another person might think it is an everyday, non-event. It all comes down to perspective.
I am frequently melancholic between the dates of Columbus Day and Valentine’s Day. Many family birthdays plus ten of the seventeen major holidays fall during that time period. All of those holidays mean disrupted schedules and abundant, visible food, which makes life for someone with Prader-Willi Syndrome onerous, thereby making the life of a PWS mother sorrowful. Brokenhearted, for years I watched her frustration with an upset schedule and from her determined and calculated attempts to obtain the forbidden, yet present food. I found ways to avoid events and searched the recess of my brain for activities that might please her. When a person feels as if they are starving it is not easy to please them with anything other than food. A challenge, indeed! This has been the way I have experienced the holidays for the past twenty-seven years, but not this year. The melancholy was my issue. I needed to learn another lesson from my daughter and she readily, yet unwittingly educated me.
One night she was in the living room making comments on a new cookie recipe that a friend had posted on Facebook. I wrote her a message explaining all of the high calorie ingredients of the recipe. She described to me how, if she could make the cookies she would use different ingredients and lower calorie substitutions if she could find appropriate replacements. She ended her message with, “but I can’t so I won’t try them.”. She was full of excitement when she wrote her first comment under the post and ended up easily throwing the cookie idea down the drain! Wishing that we could go ahead and whip up a batch of cookies together and nibble on the broken ones as they came out of the oven, I wistfully wrote to her, “bummer, the holidays suck, don’t they?” Grab your tissues now. I can barely see my monitor screen for the tears that have welled. This starving, cookie wanting young woman’s reply to me, her dismal mother was, “they don’t suck they good if make them that way”.
Once my tears and sobbing subsided, I realized that all these years, my anguish was just that. MY anguish. It had never been her anguish. I had despaired over my wishes, dreams and desires for her. I wanted her to be able to build a gingerbread house and lick the frosting and candy from her fingers. In her simple statement, she told me that she had experienced good holidays, they had not “sucked”. Any person who loves another person has one main wish for their beloved – happiness. In my misguided mind, I thought that because she wasn’t allowed the holidays I experienced as a child, her holidays were unhappy. While I agonized over lip gloss, hand lotion and sugar-free gum to fill her stocking, I thought the stockings I filled were inadequate because they were not laden with fruit, nuts and “sugarplums”. (I will admit that the non-edible items were usually flung aside as she searched the empty toe of the sock hoping to find a treat, this action is what cemented her dissatisfaction in my brain.) Even though she was disappointed to not find the food she was looking for, her memories of the holidays were not tainted by the disappointment.
Our perceptions of the holidays, our expectations of the holidays were completely different. I wanted to move heaven and earth to make her happy when all I needed to do was make them not suck. When I understood that the possibility of me moving heaven and earth was unrealistic, my hopes became more attainable and this year (so far….cross your fingers that I can carry this over into New Year’s Eve!) the holidays were good.
“they good if you make them that way.”
~You can learn a lot from people who view the world differently than you do.~ D’Angelo
~Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth.~ Aurelius
“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.” ~Frederick Buechner
I am so often aware of how precious our moments in life are. Buechner is right, I can hardly live through the awareness of the preciousness, it leaves me frequently in a weeping state. I have referenced this statement of his before and probably will again because it so moves me. Today my weeping began when I was the recipient of extreme compassion by a woman who could have easily remained disconnected, aloof or unaffected by my story. She had nothing to gain by encouraging my discourse and it was not part of her job description to show me such kindness. It was part of her generous spirit to involve herself and share of herself. Because of her willingness to get involved my heart was touched. She asked probing questions and presented me with various options for dealing with the situation, all while completing the duties she needed to accomplish. Instead of sitting bare-assed on a doctor’s exam table I felt like I was sharing coffee with a friend at a painted kitchen table with zinnias and sunflowers outside of the window, this is how comforting she was. If I was capable of bestowing some sort of Nurse Extraordinaire award, she would be the recipient.
I had so many people showering me with kindnesses this day that my tears were more of a shower than the relenting summer rain.
~A kindred spirit with whom I share the bond of each of us having daughters who need a little extra from us as mothers, and the bond of loving life and choosing to extract every ounce of pleasure and happiness it offers.
~My beloved sister whose thoughtfulness and generosity escape from her with every breath she exhales.
a friend whom I have known since Kindergarten making a comment on Facebook that felt more like a hug than a social media entry.
~ An old friend whose emails bring me laughter and comfort always.
~A fellow swimmer inquiring after my daughter’s well being.
~A friend whose door is always open with love and peace waiting just inside the door.
~A non-person entry to this list, a fiery sunset sinking into the river after the rain subsided.
We all want to be complete, strong and courageous, so anytime I realize that I am actually broken, vulnerable and needy I am grateful to those who build me up, hold me up and shore me up with their extreme acts and words of kindness, thoughtfulness and compassion, whether they are a person who does that on a daily (some days hourly) basis or if they are a person who briefly touches my life once or twice a year.
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.