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A Joy to Carry:

John Joseph "JJ" Walz's Story


John Joseph, baby with anencephaly

I am happy to be able to share the brief and beautiful life of our first child and son, John Joseph "JJ." The year of 2021 into early 2022 was such a whirlwind and season of new challenges to come. My husband and I had just gotten married in April 2021 and much to our surprise, I found out two weeks later that I was pregnant with a honeymoon baby! From the get-go, I had a strong inclining that I was carrying a boy. Balancing a brand new marriage, full time jobs with long hours, and the early symptoms of pregnancy was exciting but overwhelming for the both of us, and I had such morning-sickness with him!

Everything was happening so fast, and then on August 18th, 2021, our lives changed forever, screeching to a halt. During our 20 week scan, the ultrasound tech started to act a little strange at the tail-end, and she had me leave the room to give a urine sample while she frantically left to go find the head OB/GYN of the practice. She had been having trouble getting a good picture of our child's head. We had confirmed earlier in the scan that we were expecting a boy, which we were so excited about, and everything looked good and routine; my husband was worried but I was thinking that this was just a common issue or mistake and that there was an explanation. The head OB/GYN came into the room and completed an transvaginal ultrasound, I could see by the look on her face and her demeanor—something was definitely wrong. She broke the news to us that our son had a life-limiting condition called anencephaly. This was a lot to take in for anyone, let alone new parents, and neither of us had ever heard of this neural tube defect. To get such amazing news about having a son the same time as receiving such devastating news was something, looking back, that God had prepped us for. In the moment, I imagine a holy presence with us in the room, giving us courage. I felt a surge of strength and let them know right away that we were denying a termination and we were going to continue the pregnancy. Our son was our son, and was still living while in utero. He had value and dignity, regardless of what society or the medical community thought or believed made sense in the situation.

With the Incredible support of our faith community, family, work colleagues, mental-health counselors, and friends (old and new ones that we met along the way), we were able to pick ourselves off of the ground, and live each moment, each day and honor his life and our amazing 9 months with him. We got amazing advice/fellowship from women in a faith-based non-profit group who had been through similar or the same circumstance with their children, and we got respect and cooperation from my OB/GYN in our decision with subsequent appointment scheduling/monitoring that made us feel comfortable and safe. We were also referred to a wonderful perinatal hospice program. We became over the next 4 months spiritually prepared, and also medically/physically prepared for the day that I would go into labor, which I was told could be anytime. Maybe he would be born alive and we would have time with him, and maybe not, but we were ready either way and accepted that it would be God's will for what would play-out.

Every day was a gift with him, and I carried him for a full 41 weeks until I was induced and at that point, we were ready, and believed that JJ was ready to continue God's plan for him. Unfortunately when he was born in the evening of January 13th, 2022, we never got to see him alive out of the womb, as he passed away at the end of labor right before he emerged. I will remember him and his little idiosyncrasies from his ultrasounds, and will never forget the experience of feeling him moving about during the delivery. I made sure to document all of the unique aspects of the entire pregnancy and transcribed all of that into a memory book that we will cherish forever.

Our son helped my husband and I to realize that we really can't control our lives like we aspire to or trick ourselves into thinking that we can. We accepted eventually that JJ's handicap didn't come about because of anything that we had done wrong, and we didn't have any physical or genetic issues that would be an answer to the many "why" questions swirling around in our heads. We will never fully understand where God intends to take us on the journey of suffering, but from JJ's little life, my husband and I have learned so much about what we are made of, how to be grateful for community, and the experience with him has led us to some amazing people that inspire us and dare us to be better people. This is a painful journey that will never really end as long as we are still on this earth, but it is so worth it. I have no regrets, especially after holding him in my arms after delivery, bathing in the warmth of inexplicable love and gratitude.

Although we didn't to take our son home with us when we left the hospital like other couples got to on that day ( and leaving him was probably the hardest thing that I have ever had to do in life so far) we got to lay him to rest after a beautiful mass and burial about a week or so later, and that is when we said our final goodbyes, for now. He is forever with us, interceding for us, and will always be our first child, our first boy, and the one to make us parents. We frequently reflect back, and we find new ideas or new thoughts that come about regarding the process of carrying him that year that strikes us as important and meaningful, and pull at our heart. Other family members have also felt his presence in different situations or settings since his passing which has comforted us and made us smile.

We have since welcomed our second child, a daughter 13 months after his birth, and already talk to her about her big-brother, and will continue to find ways to honor his life moving forward. I say this to hopefully comfort you as the reader, and I know it gave me much hope after reading others' stories on this website to know that they went on to have healthy children after tragedy. Just because JJ isn't physically here anymore doesn't make him forgotten or unimportant to us or our family and friends, and children that are welcome later on will never be replacements. I know JJ has touched so many people's lives and we both know that he will continue to do so, and that he is in eternal rest now. He will never forget us either and I know that he is grateful for the time that we allowed him. We are so proud of him and whoever is reading this, I am proud of you and your family for accepting your child and carrying them until it is their natural time to pass. Know that there are so many people in your corner, praying for you, and many, many who have walked in your footsteps through a similar difficult pregnancy. Know that it is so worth it and you will never regret choosing to carry your child with anencephaly.


Last updated March 20, 2023