By Beth Seyda –

After my infant son, Dylan, died I started jotting down various things and scenes I recalled from our experience.  I wanted to write about these memories not only to capture the details of Dylan’s life and death as a personal keepsake, but I also wanted to send it to our health care team.  I wanted them to learn from our experience.  Writing our story felt good, it was therapeutic for me. I wanted to share the parental aspects as well as the medical.  Writing allowed me to release all this “stuff”.

Afterward, I felt different.  For a while I was weepy and wondered if I was having delayed post-partum depression.  Or maybe I was moving onto some new phase of grieving.   I called DJ, our grief counselor, and described this to her.  Did she have any idea what this was?  She said writing was helping me let go of a lot of things and it was allowing me to move on.  And it would feel different.  That was good enough for me, as long as this made sense to someone who was trained in grief counseling, I was OK with it.

As time went on, more of these “letting go” feelings occurred and I struggled with them.  I kept holding onto those two weeks of Dylan’s life so tightly, but what had wrapped itself around the wonderful memories of his brief life were layers upon layers of pain, loss, and grief.  All those layers were heavy and I became accustomed to drudging that around.  So it felt like if I let go of the pain, I would let go of everything, including Dylan.  And I would not let go of him.  The pain from the loss and my love for Dylan were so intertwined.

Very, very slowly I learned that I could let go of the pain and Dylan remained.  It took me a while to recognize that, though.  After shedding some of that weight, he just felt so light, like he wasn’t there, which terrified me.  But then I could feel his presence, his spirit, he had not gone anywhere.  I just had to get used to feeling lighter and know that Dylan would always be in my heart.

Beth Seyda’s life was transformed in 1997 with the birth and death of her critically ill newborn son, Dylan.  She combines her 25+ years of professional experience in consumer research with her personal experience as Co-Founder and Executive Director of Compassionate Passages, Inc. The mission of her non-profit organization is to give a voice to pediatric patients and their families through advocacy, education, and research with the goal of improving pediatric end-of-life care and providing support to dying children and their families.  Compassionate Passages donates the book Empty Cradle, Broken Heart: Surviving the Death of Your Baby to bereaved families.

Beth lives in Chapel Hill, N.C., with her husband, Mark, and their 7-year old son, Tyler.  To learn more about Beth’s non-profit organization, go to: www.compassionatepassages.org