By Sherri Melnychuk
When I used to lie in bed with Ava in the hospital, I used to watch her sleep. I would think all sorts of thoughts. I would think about how unfair it was that she was stuck in this hospital and could not be a regular three-year-old. I used to imagine what we would do the next day if we had never had cancer enter our lives. But mostly, I would think the worst thoughts about the future. I could not imagine losing her. I could not imagine living without her. I could not imagine her dying. I would die too. Real, honest, ugly thoughts that no one wanted to talk about, for we were on the side of hope, the side of a cure. We were fighting and everyone wanted us to focus on that and not on the “what if it doesn’t work?”
Well, the worst thing happened.
Ava fought a rare and aggressive form of Acute Myeloid Leukemia – AML. She was diagnosed just before she turned two years, had a transplant at three years, and was cancer free at four years old. The odds were never good for her to live a long life, but she fought hard, wowed the doctors, and we believed she would be cured. But it was not meant to be. Ava passed away in my arms two months before she would have celebrated her 5th birthday.
In my mind, if Ava were to die, I would die too. That is how I imagined it all to be.
Except, there I was ALIVE, and I had no idea what to do with it.
I suppose that was my awakening. When I woke up the next day after Ava passed, I was alive. I was shocked. There I was, alive! All those nights I watched Ava and was convinced I could not live without her; there I was, living without her. The other shock? I didn’t want to die. How could that be? I wanted to live! I wanted to go enjoy the day with my two-year-old, Alivia. Just one of the many gifts my Ava left me – the gift of life. I understood how precious life really was – that is the unwelcomed awakening that would come to any parent whose child has been diagnosed with cancer – life was precious. One day at a time. Make the most of each day.
The moment Ava passed was awful, of course. But it was also perfect and beautiful too. Ava was at home, surrounded by the people, pets, and things she loved. I felt grateful that I had been there for her first breath and her last breath. That night she passed, the moment, everything about it is forever etched in my heart, but it wasn’t the worst. I suppose it was because my grief for Ava began the day she was diagnosed – almost three years before she passed. The whole process of grief began that day. Some of the most traumatic moments of Ava’s journey were hearing the odds, understanding her chances, knowing the risks, fearing the worst, analyzing the bruises, the red eyes, the fevers, the sickness, the treatment, the infections, the unexpected surgeries. Some moments in the hospital were worse than the actual night she passed; which I know is difficult for anyone to truly understand. It was a hard way to live – in a constant state of worry. I know Ava is free now, and I no longer worry about her. I just continue to love her and mother her from afar. When Ava passed away, although I believed she would be cured, I was already well experienced in the process of grief. The only thing that was different was that I ached. My body, my heart, my core, ached in a way that I had never felt before. It was so hard to describe. I just hurt in places I had never hurt before, but it was my grief. My raw, heart-shattered-in-a-million-
One can never prepare for the loss of the child. Even though Ava’s illness was life-threatening. I wasn’t prepared for how hard living without her by my side would really be. Sure, I knew it would be horrible to live without her, but I did not expect the ripple effect of loss. Everything in our lives changed after Ava left. We “lost” a lot of things besides Ava – our way of life, our friends, our family, our relationships, our outlook on life, our social activities, holidays, family get-togethers, the list is endless. After Ava left everything changed, and we were not prepared. We lost her and almost everything connected to her. It has taken years to rebuild, but we have rebuilt, and we have found happy moments in life which occur simultaneously with our grief for Ava. Happy and sad are beautifully intertwined in the fabric of our day to day life. I enjoy my days with my two girls who are still here with me – Alivia, who is now seven and Anaya, who is two.
The pace of your grief, the way you express it and come to terms with it is unique. Losing Ava has given me some of the greatest gifts in life. I am kinder, worry less about the little things, and I truly do my best to choose the happiness and joy in every moment. I am also less judgmental about others and their situations. I felt so judged by others when Ava was on treatment, when she was terminal, and after she passed. I felt my life was an open book, and I longed for my privacy back. I turned inward in those first few years of grief. But that was so hard as I wanted my privacy but so desperately wanted everyone to remember Ava. “Please don’t forget about her!” I was screaming inside! And now, almost five years out, I am starting to share more of my story with the world.
It is not an easy walk of life, that’s for sure. I don’t believe we ever move on from losing one of our children. I do believe, that I am on a healing journey of grief. This journey is ever-changing, because I am ever-changing. I can choose how I react to all life throws my way – I choose to be happy. I choose to live this day. I choose love. It is not always easy and some days are better than others. But I am in control of how I choose to live the day that has been given to me. I choose to honour Ava and advocate for her. Ava used to get up each morning in the hospital (early, I might add!) and wheel her pole to the drawers to choose an outfit. It always amazed me that this little girl, enduring such horrific treatment, would eagerly get up each day and get dressed! And she was so happy! Now that she is gone, it is the very least I can do for her – wake up each day and make the most of the day that has been given to me! I also strive to be happy and joyful like Ava.
Ava’s light and love shines far more brightly than the darkness of her death. I choose to see her time on Earth as complete. Her soul had completed all the world needed, and it was time for her to go to Heaven. But I am still here, and I am not done my work on Earth yet. Life moves forward whether we like it or not. I can choose the path of bitterness, anger and darkness or I can choose the path of light, love, and hope. For my Ava Hope, I can do that. It is my gift to her in return for all she has given to me.
Sherri Melnychuk is a mother of three: Ava Hope (forever four), Alivia Grace (seven), and Anaya Faith (two). She lives in Regina, SK, Canada and has been married to her wonderful husband, Randy for 12 years. She is a former Kindergarten and Grade One Teacher and currently works at home as a mom and the owner of Wee Piggies & Paws Regina. She is also a blogger and an author and works very hard at living in the moment, accepting life, living with a grateful heart, and paying attention to the signs God sends her. You can find her on Facebook at HipposandBows and Regina Wee Piggies.
You may also like
4 Comments
Products
-
Bulk Journal Orders $9.95
It is so true that when a child is diagnosed with something with odds against recovering we start the grieving process. Our daughter had surgery in September 2014 for a brain tumour. Surgery itself went well; complications followed day two and three. We still have Sarah but she no longer can communicate with us and is totally dependent on us for movement. But boy do we miss that 12 yr old that was active, bright and sharing her dreams and hopes for the future. There are days when hope outweighs fear and sadness but all we can do is live day to day; minute to minute.
Thank you for sharing your journey… I fully understand and appreciate almost every step of it.
(Maybe one day our paths will cross; we live outside of Saskatoon.) Blessings of love, strength and happiness for your family?)
Living day to day and moment to moment is exactly how it is! I, too, remember those days.
Hoping this little reply finds Sarah doing well.
Thank you for reading about my Ava. Perhaps our paths will cross = you never know!
Take care,
Sherri
I have said those exact words about the day my daughter Kate died, it wasn’t the worst day. Diagnosis, in our case a rare neuromuscular disease called Spinal Muscular Atrophy with Respiratory Distress or SMARD, was much, much worse. The grief began that day, and the pain was intense. Honestly I felt some sense of relief as I held her the day she died(only 2 weeks later), because she was no longer struggling. She was also at home, surrounded by love and finally at peace. I never imagined that I would describe the day she died that way when we learned she had a life limiting disease, but that’s how it was.
Blessings to you and your family. Ava certainly made a lasting impact in her short life.
It is amazing how many of us have similar experiences!
Thank you for sharing your story about Kate.
Sending you hugs and love across the miles!
XOXOXO
Sherri