It’s been over two years since we lost Evelyn Grace. At times, it feels like it gets easier—then all of a sudden the pain, the guilt, the emptiness come crashing back down. I’m cut wide open, raw, yet again. While I’m learning to ride the waves of grief, I still have rough times getting back to shore. Being a parent is tricky, especially with the loss of our second child. I overthink every decision I make and place unnecessary blame on myself when something goes awry, especially medically related things. I just want to keep our family as safe and healthy as possible.
I recently re-read all of my and Evelyn’s medical encounters and notes. I didn’t realize that there were “borderline” lethal measurements or that the excessive fetal movement during the later ultrasounds and MRI or the skin edema extending down into her chest could indicate an adverse pregnancy risk including stillbirth. Certain things stick out to me now that I should have questioned more. Other things, I completely blacked out. I tried to be so hopeful and did not want to end my very wanted pregnancy.
Overall, Evelyn had a sizable deletion on the long arm of the 9th chromosome that affected all of her body systems. There are only a few studies done on smaller deletions (with some overlap of Evelyn’s deletion). Even after reading all the studies I could find and about the genes affected by the deletion and seeing the struggles Evelyn would have faced in life, if she survived, I still struggle with the difficulty of being the person that made the “decision” to end my child’s life.
August 10, August 30, and December 22 are days I’ll never forget. It was August 10 when the sonogram tech told me, “there is something horribly wrong with your baby.” August 30 is the day I birthed Evelyn, Evelyn’s “birth” day—just 24 hours before her birth, we crossed state lines into MA to have an abortion where the procedure to stop Evelyn’s heart did not work the first time, so they had to do it again. December 22 was Evelyn’s due date (I do find some solace in knowing Lainey was also born on the 22).
It’s hard to explain how these dates make me feel or how I dissociate for a few months and resort to unhealthy coping mechanisms like overspending, overeating, and over-playing this unlikely situation in my head with what ifs. But I do know I am grateful to organizations supporting parents who’ve experienced loss, especially Empty Arms, and professionals and organizations providing necessary healthcare to individuals seeking abortion and who see reproductive rights as fundamental human rights.
I wish I had more time to make the decision or that the pregnancy ended “naturally” after finding out about the diagnosis and before my termination appointment. I wish I did not live with the pain and guilt I feel everyday. I hope my choice led to Evelyn never feeling pain—I read somewhere a baby can’t feel pain before 24 weeks, which may not be true, but that’s what my gut went with at the time. One day, I hope all pregnant individuals have the right to make decisions impacting their bodies without having to cross state lines or worry what might happen to them. I wish people understood the pain associated with birthing a child and coming home without them. I wish people acknowledged this type of grief instead of pretending it never happened.
While Evelyn is not physically with us, I hope she continues to be remembered.
The Syrup Stampede is an essential fundraiser for Empty Arms, and your gift helps support families across Massachusetts and beyond whose babies have died through miscarriage, stillbirth, early infant death, or termination for medical reasons. In past years, individual donors have come together to raise more than $30,000, and gifts of every amount make a difference.
