I remember attending the funeral of my cousin in 2016. I remember seeing the pain in my aunt’s eyes and thinking “I cannot imagine how she is feeling. I don’t know if I would be able to survive something like that.” Little did I know, that four years later, I would be living that exact reality. My husband and I discovered we were expecting our first child on July 8, 2019. Two months later, our entire lives changed when we discovered our son, Dominic Gabriel, was diagnosed with Heterotaxy Syndrome with several complex congenital heart defects. Not only was he medically complex with a poor prognosis, but we needed to relocate our entire lives to Colorado, 16 hours away from our home, to deliver him and receive medical treatment for 6 months to a year. We gave up our home without hesitation and we moved. We lived in different Airbnb’s every month, from January to June 2020.
Dominic was born on February 17, 2020. He had his first open heart surgery 16 hours after he was born, and the uphill battle of recovery began. We eventually got discharged on April 20, 2020, but we needed to stay local. We ended up going to the emergency room 3 weeks in a row, due to J-tube related problems, and then landed back in the children’s hospital, inpatient, as of May 27, 2020. He began healing from a bacterial infection on his skin, near his J-tube area and we began making a game plan with his medical team about his second open heart surgery, and then we can finally go back home to Montana!
Then the unspeakable and unthinkable happened. Dominic went into cardiac arrest on June 6, 2020 and was placed on ECMO. They performed 5 different weaning trials and all failed. He had suffered so much brain damage, that his brain could no longer register and send signals to his body when epinephrine was administered, even at high doses. Which meant, if he went into another arrest, they wouldn’t be able to help. He then began to deteriorate quickly and went into organ failure. Then we got the “we are crossing that bridge. We are out of options.”
Never in my life did I think I would need to talk to palliative care about “how and when” we would “let go of our son.” I wanted to scream. I wanted to punch the walls. I wanted to curse at God and ask him “why? Why are you taking THIS child from me? The one I prayed for and then received, just so YOU can take him right back?” It wasn’t fair.
We then decided to call our family to come to say goodbye to our son. Then the staff informed us that a non-profit called Now I Lay Me Down to Sleep offered a free professional photographer for these moments. Allowing families to have photos together, as they said goodbye. I was so happy but heartbroken at the same time. We were planning to take the photos on Father’s Day, but Dominic was declining so fast, that the doctor let us know he may not even look the same come father’s day. So, we did it the day before. NILMDTS gave us a beautiful experience. Photos I will treasure for the rest of my life.
It’s been 9 months now since we’ve said goodbye. Grief is like a hurricane, that just comes through your life and destroys everything around you. And then you’re left to figure out how to pick up the pieces. We just celebrated his one-year birthday and honored him by sending off biodegradable balloons, along with many of our friends and family across the U.S. I asked my husband, “how am I supposed to live without him? How am I supposed to live this life, knowing I will never see him again in this life?”
Nine months later, and I still don’t have a handle on this grief. Some days I feel like I can do this. Other days, I feel like someone has a vice grip on my heart and twisting it. Then setting weight on my chest, to the point where I can’t breathe. I have accepted that this grief will always exist. My love for my son is endless, so it’s no surprise that this grief will be endless. The one and only thing that has kept me going until this point is that I must now live for my son. Because my son didn’t get to live, I have to live and honor him. I am now an advocate for CHD, pregnancy and infant loss, I share his story and photos every day, and I’m in school, working towards my Ph.D., all for him. Finding ways to honor your child, is the best advice I can give to a bereaved parent. It’s been healing in more ways than one.