When I was pregnant with Ethan and was first told that our his condition was “incompatible with life,” I had no idea where to find practical resources to guide us through the days to come. I craved information, but when I pulled up a search engine, I realized that I had no vocabulary for the situation I now found myself in. I didn’t know that “carrying to term” was the phrase for choosing to continue the pregnancy despite what the medical world called an “adverse diagnosis.” My doctors were more than happy to “act quickly” before this fetus began turning into a baby, but the medical community offered no place to turn when I insisted that the decision to end a life was not mine to make.
I’m not sure how I found my way to Now I Lay Me Down to Sleep, but once I connected with the infant loss community, doors started to open. A very kind woman there introduced me to our local perinatal hospice (another new term for me) where my husband and I could receive free counseling and support. She also set me up with one of her organization’s volunteer photographers who offered a free maternity photo shoot and then came to the hospital to capture some phenomenal shots of our little family.
Since then I have often found myself referring friends and friends of friends to these services in an attempt to help others navigate their own unchartered waters. I’m happy to report that many more resources have emerged since Ethan’s death, and I’ve decided to compile a list here.
As I mentioned, this organization took beautiful pictures of my family the day my son was born. We took many pictures of our own, but our volunteer photographer Kathy’s skill and professionalism made her shots instant family treasures. The love and warmth we felt for Ethan just seems to radiate off the pages of this photo album. I cannot say enough good things about this organization. Their core mission is to photograph families who have experienced a stillbirth, so documenting Ethan’s short life was a bit out of their normal experience, but they absolutely nailed it.
Perinatal Hospice and Palliative Care
It makes my heart happy to see how much the list of programs has flourished in the past seven years. Our local organization, Journey of Hope, was an invaluable resource for preparing for and healing from the loss of our son. There are over 200 programs like it in the U.S., and over 50 in other countries. You can find the complete list at http://www.perinatalhospice.org/list-of-programs.html
Focus on the Family
When I was pregnant with Ethan, I was lucky enough to stop by the Focus on the Family Headquarters in Colorado Springs. Their gift shop carries a massive selection of inspirational and spiritual books, but I was disappointed to find nothing to fit my specific situation. Luckily, Focus on the Family now offers an online series written by Tammy Tate, entitled “When Your Baby Won’t Survive.”
Just days before Ethan was born I came across Waiting With Gabriel by Amy Kuebelbeck, and I devoured it. I was so excited to relate to a story so similar to what I was going through. Her articulate discussion of the decision-making process, the months of planning, and what she actually experienced through her son’s birth and death were like a balm to my aching heart. She said that choosing to abort her son Gabriel would be “rejecting a gift,” and those words of wisdom have stayed with me over the years. Kuebelbeck is also the founder of perinatalhospice.org, and the author of A Gift of Time.
The year after my son was born, Angie Smith wrote I Will Carry You, a story of how she and her family chose life and love for their daughter Audrey Caroline. I was immensely blessed by an anonymous friend who sent me this book as soon as it was published. Smith shared her journey throughout her pregnancy at her blog, Bring the Rain.
This list is by no means complete. There are many other wonderful blogs, and resources about specific diagnoses out there. For even more information, visit http://carryingtoterm.org/ and http://perinatalcomfortcare.org/resources/. If you would like to hear more of my own story, check out my posts Ethan: Part 1 and Ethan: Part 2, or subscribe to this blog to get updates as I add to the story.