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
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.
Being a nurse I have seen patients being dutifully cared for by their loved ones. Children and adults with varying degrees of mental and physical challenges who make it through each day due to the assistance of loving mothers, fathers, brothers, sisters, aunts, uncles and grandparents. I have watched grandchildren feed and bathe their infirm grandparents during their final earthly hours.
Today what I saw was different. I saw love today.
“Peter Pan” was playing at our local “Broadway in the Park” Music Guild Theater this afternoon, allowing Katie and I a chance to escape to Neverland. I only saw the production in the periphery of my consciousness and only through tears. I sat behind a woman in a wheelchair, not an elite motorized wheelchair which she might have looked at home in; you know the type that you can tell is a permanent fixture for someone. She sat hunched in a chair that looked like a rental chair or perhaps it was a borrowed chair from a living facility. Whatever put her in that chair was most likely a recent event. Her husband sat in the theater seat at her side. I watched because I couldn’t not watch, I was drawn to the one-sided exchange being played out before me. He leaned into her and whispered in her ear that the show was starting. His hand hooked through her elbow, intermittently patted, stroked and squeezed her arm. She did not respond, she did not lift her head, she did not pat him back, she did not lean toward him, she did not cock her head to hear him better. She continued to sit hunched in her chair and he continued to try to get her involved in their “date”.
I had a clear view of his profile and I watched his features expose his emotions. He looked worried as he told her the show was starting. I wondered if they were regular theater-goers and this was an outing that he hoped she might enjoy as she had in the past. I saw hope as she lifted her head during a particularly rousing crowing number, the “er er er er” got her attention briefly.
He continued to stroke and pat her arm. He rarely watched the show but once a smile came to his face when something happened on stage that he must have anticipated her liking, when he turned to her he saw her face was down and his smile left quickly, he was crestfallen. I watched him inhale deeply as his shoulders shuddered and he wiped away tears with his hand that was not holding on to her. He frequently spoke to her about what was happening in the show, occasionally she would clap when the rest of the audience applauded. I saw sadness and anguish, but what was most apparent and what overshadowed everything else I saw, was love.
I don’t know their story at all, but my outrageously vivid, romantic imagination played out many scenarios. Perhaps they were one of the known “Music Guild romances”, having met and fallen in love during a production they were in. Or perhaps the first date they had as 17 year olds was at the old open barn Music Guild to see the 1950’s production of “Peter Pan”. Maybe they had thespian children who had performed in “Peter Pan” during their childhood. Due to their age I automatically assumed that the emotions I was watching were because of many years together and the sadness that those years are coming to a close. I could very easily be wrong about that. There is a chance that the love I witnessed had not been theirs for a lifetime as I first imagined. Maybe they found love together recently, maybe they were the 17 year olds on their first date at Music Guild to see “Peter Pan” but then their lives took different paths only to bring them together again just in time to share love before the tragedy of ill-health struck.
I have no idea what the story truly is. I only know that the lesson to me was, there is love – always, there is love. While Peter Pan was busy onstage, crowing about never growing up and not wanting to be a man and stating “I am youth! I am joy!” I saw a man. I saw his wife. I saw love.
If Peter Pan could grow up to be a man with a courageous heart like the man I saw today, youth would not be so enticing.