CELIA KRAMPIEN/The Globe and Mail
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I joined a club, a club I never wanted to be part of. I became a member of the vilest group, a parent's worst nightmare guild. My child died. There, I said it. There was a time I could not say these words. I often tell people I have three children, leaving my eldest daughter out of the family circle. I feel guilty each time, but it can be easier than explaining the past.
"You have a beautiful baby girl," the doctor announced. It was Aug. 25, 1992. This was our first baby, after a difficult few years enduring miscarriages, medical procedures and, finally, fertility treatments. This was our final gift, our precious daughter Carly. She was a beautiful baby, with sandy blond hair and chocolate-brown eyes.
Carly was the picture of perfect health during her first year. I look back at photos of us during that year, our gleeful smiles and sparkling eyes, kissing and hugging our baby. I envy that year, when my heart was beating whole, not missing the piece that aches on certain days when I least expect it, leaving me breathless.
When she was 1, she was diagnosed with a rare blood vessel disorder called Hereditary Hemorrhagic Telangiectasia. Basically, her blood was not receiving the necessary amount of oxygen from her lungs. It is impossible to describe the depth of our pain when we received this news. Our daughter was dying; it could be months or a few years. We started our grieving that day, our slow journey toward her death.
Looking back, it was strangely wonderful at times; in some moments we forgot. Outwardly, she looked quite healthy, running around and getting into mischief. Each day was another day to celebrate Carly's short life.
We filled our days with family and friends, and celebrated her birthday over and over again. She loved blowing out candles, so heck, why not have a cake each week? We would buy and wrap little gifts that she took delight in ripping open. She loved her border collie, Panda, and would run after her. She was a little rascal, often finding the perfect hiding spot while I frantically looked for her, giggling when I finally found her. Trying to find the moon each night was a game she played. If she spotted it during the day, that was her very special day.
We gave her enough love in those few years to fill a lifetime. To her, life was perfect. She didn't know she was dying.
I have since experienced the other kind of death, a quick death. I don't know which one is better; if there is some way to measure. People say "you have a chance to say goodbye" when the death is slow. That is a lie. I never said goodbye to Carly; the whole time I was trying to save her. Better nutrition, more fresh air, praying harder. Nothing worked. In fact I felt incredibly guilty that I could do nothing as each day saw her getting weaker.
I remember driving home from the doctor's office about a week before she passed. I was crying and her little voice spoke up: "Don't worry, Mommy, everything will be okay." What an old soul. There she was, comforting me on that drive.
We did have joy during those last days. Her little sister Jillian was born. Carly had been so excited to meet her little sister. Even though we weren't sure she would make it to the birth, Carly fought to be there. At the hospital she sat on my bed, tasting tiny bites of food from my tray. She held her sister and put her thumb in her mouth when she cried. She knew how to comfort her at such an early age. "Don't cry, Julianna," she would say, her own little nickname. She would be thrilled to know that her two brothers followed in years to come.
I don't remember too much around her death: Thankfully, shock is Mother Nature's way of giving us some reprieve. I do know that I held on to her desperately tight that day, clinging to my angel, but she slowly fluttered through my grip. To a better place I believe, somewhere glorious. It was Feb. 13, 1995, and she was in her third year.
Do I wish I had never known Carly? Not on your life. She taught me so much: empathy for that cashier who is irritable, that customer who is grouchy. What are their struggles, I ask myself?
She taught me not to be afraid to approach people who have experienced loss. Recently I saw a woman whose daughter died last year. I didn't know her well, but said, "I am so sorry that you lost your daughter last year. How are you doing?" She was so thankful that I asked and we talked for over an hour about her child. I would have been afraid to ask that question before.
My other three children are healthy, and I never take it for granted. My weakness is the fear of losing another child. I accept that, and try not to hover too much, but it is hard. Knowing the pain of loss, I am not sure I could survive another. Does that make me frail or strong? I'm not sure. I hope I am more courageous, a better person from this life experience. I do know one thing for sure: Carly is watching over our family. She has sent me moonlight several times, enveloping me with warmth. When I least expect it, when I need it the most.
Marlene MacKinnon lives in Alliston, Ont.