It has been 16 months since my first child was stillborn. Our surviving child, her twin, was very ill for the first year of her life. During this time, my husband and I did everything we could just to survivewe trudged through anniversaries, birthdays, and all but one holiday in a calendar year as we watched our child fight for her life in the NICU. We could not muster enough energy to eat a composed meal, let alone begin to unpack the intense trauma we endured.

The world marched on without us as we poured ourselves into the one-pound body that lay behind the glass of an isolette.

Now, months later, while we are by no means out of the woods, we have fallen into a routine and our days have become more predictable. Easy? No. But we can sit back from time to time and take a breath. During these times of relative relaxation, emotion creeps in. I prided myself for so long on my okayness. I was holding it together and thought maybe I’d be one of those unicorn people who process their grief in their sleep. I’d wake up one day and be just fine. Surprisingly, those people don’t exist. I feel, and I feel intensely. 

It took me months to say to myself, “My child died.”

Months of denial, of taking the advice of others and focusing on the one who needs me, and burying my feelings of guilt, anger, longing, and sadness deep down inside. Now that I have the mental, emotional, and physical capability to begin unpacking some of what has transpired, I realize the death of my daughter is something that will impact my family, and most importantly her living sister, for the rest of our lives.

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I can’t hide from this or pretend it didn’t happen, though it is easier and significantly more socially acceptable. Many of the people around me don’t know how to respond to my desire to talk about her and become concerned I’m depressed, suicidal, or worsedwelling on the past.

Our world is not built to support the grieving parent.

Navigating that hard truth and determining how we can carry on her legacy has become my mission, albeit a difficult one. I am ready to think about her, talk about her, and weave her story into the fabric of our family. I want our living child to know her sister’s spirit is with her for her lifetime. That she may not be physically present, but her existence matters, and she is loved beyond measure. I want to celebrate her day (we have chosen the day she died as our celebratory day), talk about her on her sister’s birthday and on their due date. I want to create a space where we can visit her, talk to her, read to her, and sing to her. All of these steps will not only help me understand and accept her death, but they will create a new normal as her sister grows older and is able to comprehend the story of our family.

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We hung her Christmas stocking on the mantle this year. I am painfully aware that on Christmas morning, that stocking will hang empty as the others around it burst with gifts. At the head of our Thanksgiving table sat an overtly open chair that should have been filled by our toddler.

While these gestures are too painful for others to comprehend, it is imperative to me that we honor her absence.

It’s important for her sister to carry her memory and for our family to grieve the potential that was lost with that little life. I know that this is just the beginning of my journey as a bereaved parent. Our traditions and the way that we share our grief will change as time passes, but for now, I am finally ready.

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Originally published here

Jessica Wolff

Jessica is mom to micropreemie Lily, who was born at 24 weeks gestation weighing one pound and given a 5% chance at life. Jessica writes about her journey with infertility, child loss, NICU time, and medical parenthood.