In late 2021, six months after an early miscarriage, we were excited and nervous to find out we were pregnant again. Prenatal visits kept anxiety at bay with the doppler playing the sound of a strong heartbeat. We were so excited for our 20 week ultrasound – seeing our baby on the screen was one of the most joyful experiences we have had in our marriage; unfortunately, it was closely followed by the doctor coming in and saying they were seeing problems – abnormalities of the brain, heart, and a bilateral cleft lip and palate.
Two days later, after additional tests, the doctors told us that our baby (a boy!) was presenting as a Trisomy 13 diagnosis. We were told that there was a very high chance our precious son would pass away in utero, or if he did make it to live birth, would likely only live for a few hours. We had prepared ourselves for a different looking future for our child after the initial ultrasound (will we need to buy a wheelchair, will we need to change our house plans and not build a second story because this child will not be able to do stairs, will we need to look at a specific school system that has a really great special education program and resources?) – but we had not prepared ourselves for a terminal diagnosis.
It rained while we drove home after that appointment and I remember thinking it was the Heavens weeping with us over the news, because we know God loves us and our boy more than we can imagine. We researched names that would be able to adequately carry the significance of this little life and chose Reuben Rafa William Hoekwater. Reuben means “behold, a son” and Rafa means “healed” – because we knew that our son would be fully healed in Heaven. William is in honor of two of his great-grandfathers who were there to welcome him to his Eternal Home.
After Reuben’s diagnosis, we were blessed with another 13 weeks of his life. We were supported by family, friends, our church, and were taken care of by dozens of amazing and compassionate medical staff in various specialties. We made a Reuben Bucket List and tried to experience all the things we had dreamed of doing with him, had he lived a full life (building legos together, kicking the soccer ball around, taking him to all our favorite places, etc.). Many family members were able to feel his little kicks, which was so special to have that physical connection.
On June 11, I hadn’t felt him move for several hours so we went into triage and were told that they could not find his heartbeat – they confirmed he was already in Heaven. We were transferred to the labor and delivery unit to start the unimaginable induction process which would inevitably end with a silent birth. Reuben was born at 10:03 am on Monday, June 13, weighing 3 lb 7 oz, measuring 17 inches. We got to document all the beautiful moments that we squeezed into our short time with our firstborn – us holding him for the first time, giving him a bath, stamping his footprints, meeting his grandparents, uncles, and aunts, praying over him, reading him a book, singing to him. The grief and devastation could have overtaken us, but that hospital room became a sacred space, thanks to the prayers of so many people.