For one year, eight months, and seven days I gazed upon my daughter Edie, drinking in every detail.

Each morning I witnessed the infinitesimal growth that magically happened in the dark of each night transform her from a newborn to a toddler. With a child so young, it felt as if each hour brought new discovery into who she was and the person she would become. I relished in the future I had begun to write in my mind. The story I had authored was filled with promise and hope—growing older, becoming an adult, falling in love, and the many adventures she would have in between. Edie’s story was filled with life.

It never occurred to me that this story, the plan I had for her, would be re-written. Her new story would have very little of the plans I had made but it would still be filled with a life that was lived, joyfully, gracefully, and beautifully. 

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The days with Edie were long yet short, filled with the trials and tribulations of being first-time parents. This time was full of laughter, Elmo, travel, and bubbles. Shortly after the celebration of her first birthday and her first overseas exploration, life abruptly ended as we knew it. Nothing could have prepared us for what happened next.

At just 14 months old, Edie’s story turned a page in a chapter that was unimaginable, punctuated by the words, “Your child has cancer.”

Cancer is a series of losses. New normals are established and re-established as everything once familiar to you from your old life is quickly taken away.

Each victory is often countered with some element of defeat. We did not know it at the time but we were training; building stamina and strength with every wave that knocked us down until the day we were brought to our knees.

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For Edie, it would not be the ending we had hoped for. It would not be happy, our hearts would break, but the story of her ending could still be beautiful, and we were determined to give her that last gift.

For my husband and me, there was no discussion required, we knew somewhere in our souls what had to be done. It was the most heartbreaking and difficult thing we ever had to do, but we accepted Edie’s fate—it was the only way to celebrate her and give her what she deserved. We were determined to give her what we had given her up to this point, the best life we could for whatever time she had left.

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We had a short list of priorities we advocated for with the help of the hospital staff who had become family over the six months we resided at the hospital. The list consisted of Edie’s favorite things, the treasures of a toddler: bubbles, music, Elmo, and outside adventures to see the sky and feel the cool spring air on her face, something she had been unable to do for the entirety of her stay.

We needed nothing extravagant. No amount of money could have changed our circumstances or filled the hole in our hearts—all we needed was togetherness giving Edie days filled with pleasure, love, and beauty.

After six days bedside watching Edie gradually slip away, the only comfort that could be felt came from putting her first, despite our own wishes to fight the inevitable. Enveloping her with all the love we had to give provided some solace and held our grief like a dam, holding it back so we could be fully present. Even when she could no longer respond we continued to play music, take her outside to see the sky, and the budding spring flowers until her last day.

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Too weak to be moved, we knew her time to leave was nearly upon us. Snuggled between her mommy and daddy, we whispered in her ears our pride, promises, and the infinite love we had for her. The calm of the moment was supported by something sacred, a similar grounding, and connection to the world I had only experienced at her birth. As difficult as this moment was, it was the last gift we had to give. We would usher her out of this world the same way we had welcomed her to it, surrounded by the love of her mother and father.

Like ships passing in the night, Edie gracefully left on the wings of her breath whispering to her sister it was now her time. As my heart broke and I grasped my arms tightly around Edie, my body heralded that new life was following close behind.

As I said goodbye to one daughter, aching for her return, she sent her sister to fill my arms and hold my heart when I thought life would end. This tiny human now placed in the arms that only hours before held her sister for the last time, anchored me in the world of the living. My bright and shining Eleanor with her sister Edie, showed me that life was still beautiful, even if the story did not have the happy ending I had once written.

So God Made a Mother book by Leslie Means

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Amanda Monteiro

Amanda is an advocate for pediatric cancer research and palliative care, a graduate student of social work, and the mother of Eleanor on earth and Edie in heaven.

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