This blog is about my grief journey following the death of my firstborn daughter Maria. I have come to believe that we can make the world a better place simply by sharing our stories—especially the stories that are hard to hear. Some losses cannot be fixed. Time does not heal all wounds. What doesn’t kill us might not make us stronger. Not every terrible loss has an accompanying inspirational story; sometimes there is just survival. Sharing our stories allows us to be seen and gives us the opportunity to bear witness to others.
I first heard the word “vilomah” (pronounced VEE-loh-muh or VEE-ah-loh-mah) on a loss retreat for bereaved mothers. Derived from Sanskrit, it essentially translates to “against a natural order.” Other familial losses have their own words, like widow or orphan. But there is no single word for a parent who has lost a child. Many have adopted the use of the word “vilomah” for this purpose. No parent should ever have to bury their child; it truly is against the natural order.
We found out about Maria’s immensely poor prognosis during my mid-pregnancy anatomy scan, in the midst of the COVID-19 pandemic. We were faced with a devastating choice: terminate my pregnancy for medical reasons, or carry my pregnancy to term despite our daughter’s severely life-limiting diagnosis, potentially caring for her for the rest of our lives. It felt like a no-win scenario, like there was nothing we could do to protect our child. After extensive consideration, and in alignment with our deepest beliefs, we chose to carry. I would carry her for as long as I could to both show her our love and to allow her to live out her natural life.
The last five months of my pregnancy became a very different experience from most. What should have been a time of joyful anticipation became a time of significant anticipatory grief and fear of what was to come. As my pregnancy continued, her prognosis worsened. She was ultimately born full-term and, initially, did miraculously well. We knew, however, that her condition was degenerative. After a short period of evaluation in the NICU, she was discharged home with us under pediatric palliative hospice care. She passed away peacefully in our home when she was three months old. When she died, a part of me died with her. I miss her every minute of every day.
Several resources have helped me immensely. The first I found shortly after her diagnosis: a book called, “A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief,” which validated my emotions and helped me understand both what to expect and how to prepare. The second was an organization called “Isaiah’s Promise,” dedicated to supporting families carrying to term despite a life-limiting prenatal diagnosis. Lastly, after our daughter died, I discovered the nonprofit organization “Return to Zero (RTZ) Hope,” dedicated to supporting families who have experienced pregnancy and infant loss. They offer tailored virtual support groups, workshops, and in-person retreats. I continue to be grateful for the amazing support I have received from RTZ Hope, the beautiful community they have built that I am now a part of, and the work they do to support bereaved families and those who love and care for them.
I am still figuring out how to integrate my grief into my life, and I have found that, for me, writing helps. I am a bereaved mother, and that touches every aspect of my life, but it is not all that I am. My hope is that sharing about my grief journey—about loss, love, motherhood, identity, guilt, shame, uncertainty, hope, faith (or, sometimes, the lack thereof), and navigating the quagmire of life after losing my daughter—helps others feel less alone.
