Looking into my son’s deep blue eyes, many thoughts came to me as I held my dying baby in the neonatal intensive care unit on an October afternoon. The lactation nurse that had advised me on pumping breast milk for our baby’s feedings was caring for Joel that same day. I told the nurse of my great disappointment in not getting to breastfeed Joel, because he was too weak. This compassionate woman gave me the most precious gift! She showed me how I could put tiny drops of my breast milk in Joel’s mouth. His reaction I will cherish always. Joel smacked away with his tiny tongue hanging out for more. This was the first time I saw pleasure on my son’s face! That night Daddy got to see how happy Joel was with his Mommy’s milk. As a family we shared the joy on Joel’s face and held him tight. How much we miss our sweet child.
Our son, Joel, was born 9 weeks premature with several major health issues. As first time parents, My husband, Peter, and I had much to learn about our premature baby. The hospital staff encouraged my decision to breast feed. At 2.3 pounds, Joel was tube fed direction into his tummy with a special diet that included some of my milk. I pumped all the milk I could, freezing the excess for future feedings. With expert training from the neonatal nurses, we learned to care for our son. With over 30 tubes and wires attached to Joel, we held, diapered, fed and bathed him.
To nurture and love Joel was as important to us as his procedural care. As a tape of angelic harp music played, I watched Peter hold our first child on his chest, father and son soothing each other. My breast milk was something only I could do for my son. This helped me feel useful in a helpless situation. We cuddled Joel’s tiny body, read stories, kissed the strawberry blonde fuzz on his head, and told him over and over how much we love him. Despite the touch circumstances, our devotion to Joel has enriched our lives greatly.
Shortly after Joel was a month old, we received news that our son had devastating brain and nervous system damage and would not survive his serious medical defects. After many prayers, clinging in hopes of a miracle, and two more expert medical opinions, reality was before us. This information confirmed our greatest fear – our baby would die. As Joel’s parents, we wanted what was best for him. After much consideration and many, many tears, we arranged to take our son home. Our precious Joel Albert died peacefully in our arms, at six weeks old.
For every moment Joel was with us, he fueled my motivation to keep pumping my breast milk. The results were overwhelming. I stocked the freezers at the hospital and we purchased a freezer that, for lack of space, graced our living room. With our precious son gone, I thought, “what to do with all this breast milk?” I was informed of a Mothers’ Milk bank in Denver, Colorado. After my call they sent special boxes and instructions so I could donate the frozen milk to help sick babies all over the country. It is not an easy process: blood tests, doctor’s input on a lengthy questionnaire, buy dry ice, packing and shipping the prepaid boxes overnight to Denver. The staff at the milk bank were helpful, understanding of my loss and most grateful. My grief was so intense; this project gave me hope and a way to honor my son. In total, I donated 330.5 ounces of breast milk. I had hoped to keep pumping for such a good cause, but without Joel, I could not continue for long.
“How do I dry up my milk?” I then asked. Many grieving mothers face this situation after the loss of their precious babies. I posed this question to the lactation nurse. She told me of a quick and quirky way, and it worked for me. After a few days of walking around with a sports bra filled with cabbage leaves, my milk was dried up. My cabbage leaf outfit was a source of teasing from my husband, and we found we could laugh within our tremendous grief. Peter loves and grieves for Joel as much as I do. Joel’s daddy is the best. I love him with all of my heart. WE embrace our child as a precious gift from God. Joel’s presence and love has forever changed both of our lives.
It was very difficult to send off the milk that I lovingly watched Joel enjoy. I am grateful to God for giving me the strength and courage to be a good mother to our son and to share the breast milk with others. Hope comes to me in sharing with others...the gifts of Joel’s short yet profound life.
Joel Albert Grayson — August 27 – October 8, 1999
Also in remembrance of our two children lost to miscarriage, Drew Janan and Jess Asher Grayson.
Joel’s parents honor their son with an on going memorial book project, donating books to hospitals and groups for children and are lovingly donating part of our children’s library for the Kaleidoscope Project, the MISS Foundation’s new group for bereaved children. For more information on the K-Project, call 623-979-1000.
