Our Trisomy 18 Journey: The Planning

You never realize how strong you are until strong is the only choice you have. Bob Marley. The emotions a mother feels after her child dies due to Trisomy 18 or other fetal abnormalities.

This part of our journey was so very difficult. I cannot explain the the agony I felt in knowing our sweet boy was alone, in refrigeration, just waiting. Waiting for us to figure out what to do with him and how to honor his short but very important life.

It felt like my heart was being ripped out of my chest every time I thought about him laying there, alone and cold. Thanks to a loving and compassionate funeral home, I knew he was safe, but even so, it was agonizing. I wanted to hold him. I wanted to comfort him. I wanted to keep him warm. I wanted him to return to my arms, even if just for a moment, to tell him how much I loved him and how much I missed him already.

I laid in bed crying and remember physically reaching both arms out to the sky, begging God to hand him to me; to let me hold him just one more time.

Honestly, this part of the story is what shook my faith the most. I tried very hard not to question God’s will and to accept the fate of my baby boy. I tried to remember that he was already in heaven, being embraced by Jesus and the Virgin Mary, surrounded by our loved ones who had gone before us. I held tight to the promise that he was granted eternal life.

But something was wrong. It took so much time and effort to get the churches on board with the funeral planning. My parish had recently lost our Father, tragically, due to an inoperable brain hemorrhage. Our community was shaken and things were out of order, naturally. I understood that things were not business as usual, but questioned why this all had to happen at a time when I had no spiritual leader to lean on. I was trying desperately to plan my baby’s funeral, and felt so alone in the process.

I went back and forth between churches, trying to figure out how to best honor my son while also getting him to his final earthly resting place as soon as possible. I went back to my childhood church and sat down with the planner there. I remember looking up, and just outside the door of the office we met in was an image of the angel Gabriel, appearing to Mary and sharing the good news. I found comfort in knowing, perhaps, that my baby was there, nearby, trying to keep me calm.

Shortly after, I was told that the priests at that parish were not available and I’d have to wait another week for a service. I was devastated and felt so let down. Every day that passed was yet another opportunity for my heart to break all over again.

Not too long after, my parish–the parish where my daughter’s went to school–called. They told me the interim priest who was visiting from Uganda could do the funeral mass for Gabriel in two days time. I knew it was something I had to do. My husband and I were ready to let him rest under the tree we had picked out for him at the cemetery, where we could finally visit him and be nearby.

The school was beyond helpful and did everything they could to help make the day special for not just Gabriel, but for his two sisters who are a part of their community. The principal worked together with me, my mom, and the church to make sure everything was in place, but honestly, the amount of things on the to-do list was overwhelming. Planning a funeral is always hard, but in our case we had to account for the death of a child I just gave birth to. I still was trying to heal from that and having to have an emergency procedure just days later. It was a lot. We didn’t even have his birth certificate yet, let alone his death certificate.

From flowers and foods to readings and music, to hiring musicians and cantors and arranging times with the funeral home and the cemetery–it was just so much. We had to order prayer cards and have pictures and keepsakes printed and ready. We had to pick out clothes for us to wear on our final day with our baby boy. We needed a pall and a crucifix to lay on top of his casket.

The amount of things we had to do, when all I wanted was to cry and sleep, was almost more than I could bear. We managed to pull it together, though–because after all, we had no choice.

Of all the nights prior, trying to sleep the night before the funeral was almost impossible. I couldn’t stand to think about how the next day would be the time I physically was in the same place as Gabriel. I wept through most of the night and only found comfort when my five year old crawled into bed next to me, carrying the teddy bear that her baby brother “gave” her at the hospital. It was comforting to have something nearby that he had physically touched.


What are your thoughts?