365 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 this
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.
WARNING: don’t read this if you are not interested in truth.
It isn’t pretty, but it’s real.
Remember Jack Nicholson in “A Few Good Men”? : You want the truth? You can’t handle the truth!
Much of our truth is kept inside the walls of our home. This is not due to shame. I think maybe the biggest reason is because it is too heart-wrenching to relive through the telling. An episode is an exhausting event, once it is over I do best to walk away and leave it behind. Perhaps another reason I have not spilled about this is because I don’t give you all enough credit Unlike Jack Nicholson’s character I should know that because you love us…. you CAN handle the truth.
People with Prader-Willi Syndrome have some behavioral challenges that are compounded by the hunger, but also have their own impact on one’s ability to function well during a day. Examples of non-food related behaviors can be found in brochures, articles, and websites. Here is a compacted list of some behaviors of PWS you might not know about:
- difficulty with change in routine- insistence on routines
- temper tantrums
- obsessive and compulsive behaviors
- mood fluctuations- mood lability
- ritualistic behaviors such as hoarding, ordering and arranging objects
- repetitive speech
At our house I simply consider it a “meltdown” or “issue” to be de-escalated and lived through. Almost every morning, the first thing I wake up to is one of these “issues”. I hear the grumbling, shouting, crying, and stomping; my first thought is always, “ugghhhh, can’t I just sleep a little longer?” My second thought is, “Poor Katie-Did… what has put her over the edge this time?” It is often because she can’t find something immediately, so she takes a gigantic- off a cliff type of leap to….”it is gone, it will never be seen again!!” When in actuality the item is 4 inches away from where she expected it to be and might have something in front of it or on top of it. Not quite a catastrophe worthy of the tears and angst exhibited. Unfortunately, the calming down phase does not proceed with the same rapidity as the panic/meltdown phase. A calm, soothing voice (as opposed to me grousing, “for Pete’s sake, what on earth is wrong now? Have you looked where you think it should be?”), some slow, deep breaths, and a few minutes alone can turn her around….oh, and turn me around, too! The disruption caused by these meltdowns has become expected- which is to say that it no longer sends me to my room to lean sobbing against the closed door. I now can continue to the bathroom to pee and brush my teeth.
There are still times that completely break my heart because the cause of the meltdown is something that has truly touched her and is not a seemingly trivial reason for panic. One morning her crying showed no sign of irrationality, it was pure sorrow I witnessed and tried to console. She was unable to speak, but held up broken chunks of a coffee cup. The cup had photographs of her dear nieces and nephew on it and had been a treasured gift from them. She clutched those shards to her chest and gulped for air as I wrapped my arms around her and my tears fell on her blonde curls.
There are things in her life that interest her that are not food.
She loves from a deep heart.
That is pretty. That is real.
It’s here! Rare Disease Day. 10 facts you might not know about PWS:
10. Prevalence: 1:15,000. [Anne’s note: we are some of the lucky ones who got a very early diagnosis. PWS was suspected for Katie at 4 days old]
9. The constant hunger of PWS is thought to be due to dysfunction of the hypothalamus and/or (not sure) disregulation of hormones of the gut. [Anne’s note: some describe it as “decreased satiation rather than increased hunger”…I never realized there was a difference…doesn’t not feeling satisfied mean feeling hungry? I don’t get it.]
8. The most common genetic cause of life-threatening childhood obesity is PWS.[Anne’s note: the good thing about the current, national hysteria over obesity is that PWS is getting some attention and being used as a “control” group in some hunger-related studies.]
7. Individuals with PWS typically have intellectual disabilities and exhibit more behavior issues compared to individuals with similar intellectual disability. [Anne’s note: I, too, have behavior issues whenever I am hungry.]
6.The constant need for behavioral management and food restrictions may cause stress for the family members. [Anne’s note: the use of the word “may” in this sentence cracked me up.]
5. PWS is a two stage syndrome. Stage one involves low muscle tone,feeding problems and poor weight gain in infancy. [Anne’s note: feeding “problems” become the main focus from the start. A cruel sense of humor has parents doing everything they can to get nourishment into their baby, only to have to restrict it in the next stage.]
4. Of people with PWS, 1 in 35 die from gastric rupture after eating too much in a short period of time. [Anne’s note: clearly the reason for vigilant supervision]
3. Speech, Occupational and Physical therapies are all beneficial for people with PWS. [Anne’s note: and if you are lucky enough to have a Lisa Nordstrom in your school district, a PH itinerant teacher is fantastic!]
2. Growth Hormone Therapy for PWS not only increases final height, but increases bone density, muscle mass,& stamina. [Anne’s note: thanks to Katie, who was a test subject for the research project discovering this]
1. More important than any of the facts you have just learned is this: There is LOVE! [Anne’s note: yes, there is love.]
My title is a quote from Anthony J. D’Angelo.
Stay with me on this one, if you dare. It is an attempt to explain a very basic, simple thought, but I know it will be a convoluted and complicated process, because that is what it took 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.
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