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
A group of people with the worst commonality gathered to find something. What we were looking for might have been different for each person. Perhaps solace, peace, comfort, understanding, help, hope, advice, reassurance, or a place to express love. It didn’t matter what we were seeking, all we really wanted was to not know about this group. None of us asked for membership. In complete opposition of our desires we became bereaved parents. This status of being forever broken-hearted caused us to cleave together to honor the lives of our loved ones too soon gone from this earth.
Earlier this year, seasoned members of this club created a memorial garden shaped like the wings of an angel, and erected an Angel of Hope statue. If you circle the statue you will see these words carved into the base:
“Angel of Hope”
“Annual candlelight vigil December 6 7:00 pm”
“This memorial is dedicated to all those who are grieving the loss of a child”
“Our children loved, missed, and remembered”
My heart was changed seeing those words so boldly proclaimed. My grief was not going to be a temporary or fleeting condition. The words carved in stone made my daughter’s death cuttingly real. She doesn’t have a headstone yet, maybe that is why I was gripped by the engravings.
These parents who have learned the impossible tasks of breathing, standing, and getting dressed when falling through the floor feels more realistic, reached outside of their own personal grief to create a hope filled space of remembrance for all who mourn a child. This is how we happened to be gathered on a cold, windy December 6th to honor, to remember, to mourn our children.
I inhaled deeply as I pulled open the mausoleum door. I noted the bucket of white carnations and the table covered with white candles. While waiting for the ceremony to begin parents chatted with each other; there were hugs, tears, and even laughter as the candles were distributed and lit. A couple of poems were read, a song played burning words through my heart. “Tonight I hold this candle… lost in the glow, there are so many things I want you to know.” I concentrated on breathing until they began reading the children’s names which are engraved on the bricks in front of the garden. “Suzy Snowflake, Jack Frost, Hermy the Elf,” I was hearing names of children I knew from town. My hand gripped the candle cup so tightly it bent. Pressure was building up in my head, it felt like it was going to explode. My eyes were blurring when I realized I had been clenching my teeth as tightly as my jaw allowed, testing the strength of my newly installed crown, and I had not taken a breath since the name recitation had begun. I parted my lips and teeth, inhaled slowly and repeatedly until my jaw loosened and my blurriness cleared. I repeated “breathe” with every inhalation. The recitation ended. Now we called out the name of the child for whom we were lighting a candle. Because my head had not exploded, I was able to call out proudly and clearly, “Kathleen VandeMoortel”. Once we knew all the names of our children it was time to process, with lit candles in hand to the Angel garden.
My friend and I became bereaved mothers within weeks of each other earlier this year and tonight we found ourselves at the beginning of the procession, stumbling hand in hand, clutching plastic cups with little white candles lit for our dead children. I fear I might have crumbled to the ground if she had not been holding me up. By the time we reached the engraved bricks my candle had been snuffed out either from my deluge of tears or from the sobs which could not be contained. The blessed organizers were prepared and able to re-light Katie’s candle. The garden was aglow from luminaries lining the wings, our candles placed at the feet of the Angel of Hope burned brightly en masse, telling our children, “we remember you.” and “you will always light up our world.”
We placed white flowers for each child. White flowers signify remembrance and innocence. When laid in the garden, at the base of the statue, their purity reflected the candlelight. I unsuccessfully attempted to capture the enormity of the evening with photos snapped in the dark. It was a difficult sight to walk away from. I’m not sure what the preferred symbolism is of the Angel of Hope. Maybe it is the hope that our children rest in peace. Or the hope that they will never be forgotten. Or the hope that their lives had meaning. I suppose any hope one conjures is the hope we are given. That night the hope I was given was the hope of a future without my girl, the day I might no longer feel like the poem I wrote this summer when I was attending an event which was completely out of my comfort zone. I knew I would be with people who had no idea what I was experiencing. I worried about how I would present myself to others because at that time these words fit me best:
I am limp, lethargic muscles,
Wobbly, unstable bones,
Lungs filled with sighs,
And eyes drained of tears
The iron beams of grief lie heavy upon me,
Squashing all activity and dreams.
During moments when the sun shines through the iron beams,
Ideas emerge, Suggesting
a new and improved me will someday sneak Out of the dungeon of sorrow.
A world where I live without a daughter will exist.
I will grab hold of life with the tenacity she taught me.
Plans for that time are slowly forming,
The sun shines through,
My lungs inhale enough to give me a glimpse Of a day
when I will comprehend that I can survive,
and if I try,
as a bereaved mother.
Seeing the others who have walked in the dreaded bereaved parent shoes for many years and realizing they were breathing, standing, and dressed gave me great hope.
Desmond Tutu said, “Hope is being able to see that there is light despite all of the darkness.”
On the December 11, 2016, The Compassionate Friends Worldwide Candle Lighting will unite family and friends around the globe in lighting candles for one hour to honor the memories of the sons, daughters, brothers, sisters, and grandchildren who left too soon. As candles are lit at 7:00 p.m. local time, hundreds of thousands of persons commemorate and honor the memory of all children gone too soon. (taken from The Compassionate Friends)
The neat thing about the above candle lighting is that if somebody from every time zone around the world lights a candle at 7pm it means there will be memorial candlelight for an entire 24 hours.
I’ll be lighting a candle here. In fact it has Katie’s picture on it. Stick around, I’ll show you another time.
You can listen to the song, “Tonight I Hold This Candle” here: https://www.youtube.com/watch?v=PFxM_sm9pqQ