When I was only 36 weeks pregnant, I was told that my son wouldn’t survive birth and that if he did, he would likely quickly die after birth or before his first birthday.
The diagnosis we were given was that our son had holoprosencephaly (HPE), a disorder that affects brain development; it usually presents itself around the fifth or sixth week of pregnancy. Most babies don’t survive at conception, and the few that do mostly die at birth or as infants.
Our Journey After Nathan’s Birth
Miraculously, our son survived. In fact, he’s about to be seven years old! We are so grateful that he beat the odds and that we’ve been able to share so much time with him. But I didn’t always feel this way. The early days were hard; I deeply wanted him to be like everybody else and was willing to do anything to help him get there.
Having Holoprosencephaly meant that his brain didn’t divide into 2 hemispheres, so normal functions like walking and talking would be very difficult for him. I heard the statistics – 30-percent of kids with this disorder walk; 20-percent talk and so on. I was determined that Nathan would be in those percentages. I felt like my mission in life was to fix him. I wanted to be that mother that figured out what therapies worked, so I could then create a blueprint to share with other families.
I spent every waking hour researching, reading about his disability, calling doctors and therapists all over the world, networking with other families. We tried everything that we could get our hands on – from traditional physical therapy to stem cells to VERY alternative therapies like Medek.
We spent most of our money and time travelling all over the world searching for THE best treatment for Holoprosencephaly. We went to Argentina, Brazil, Dominican Republic, Canada, Singapore… and many more places to try out different therapies. Yet it seemed like no matter what we did, we couldn’t get Nathan to improve.
Moving Beyond Trying to Be the Fixer
For me, the biggest challenge is figuring out how to help Nathan improve his quality of life while accepting him for who he is. Courage for me means letting go of my own expectations of what Nathan’s life SHOULD be like and accepting him for who he is. Courage also means that I have to find balance – accepting him doesn’t mean I don’t stimulate him, it means I offer him opportunities without expectations for results.
When I let go of my expectations, I find tremendous joy in simply spending time with Nathan. He’s a sweet, tender, loving and incredibly happy little boy. He brings joy to everyone in his life, and is deeply loved by all who know him.
I’m so grateful to have finally had the courage to accept Nathan’s differences. This acceptance has helped me enjoy my life more intensely, while learning to accept my other children with their own challenges and limitations. My relationships have improved as a result as I’m learning to stop trying to control my friends and family.
Nathan has also made our entire family stronger. We’re all learning to support and accept each other fully, and that may be the greatest gift of all.
About the Author:
Marcela De Vivo is a freelance writer from Los Angeles whose writing covers a wide range of topics, including alternative medicine and technology. She often shares her life experiences with her son who has HPE. You can follow her journey at PrayForNathan.org. She loves helping other families of children with disabilities and is an advocate for inclusion in special education.
Photo credit: Marcela De Vivo