When I found out my son was going to be born with spina bifida, I waited for a while before posting the news on our family blog. I had to gather my emotions first, and I wasn’t sure how the news would be received. When I did share, I was overwhelmed by the love and support that came pouring in—from family, close friends, and friends I hadn’t heard from in years. Since then, I have continued to blog about having a child with a disability.
I blog about Jacob and spina bifida for a few reasons. I use my blog as a teaching tool—in hopes that my readers of childbearing age will take folic acid, to reduce the risk of spina bifida. Also, I hope my readers will be able to take life’s challenges cheerfully, knowing that it’s possible to be happy even when our path takes an unexpected and seemingly undesirable turn. But mostly, I write to raise awareness. Spina bifida is one of the most common birth defects in the United States, but how many people have even heard of it? Not to mention the accompanying terms myelomenigocele, hydrocephalus, and shunts? I sure hadn’t, until that memorable ultrasound appointment 19 weeks into my first pregnancy.
After Jacob’s shunt placement surgery, a man walking by us in church asked if my baby had "bumped" his head. How could I explain that the bump was actually a shunt—placed in his brain to treat hydrocephalus by draining the excess cerebrospinal fluid that had accumulated in his ventricles? He just walked on by, not really caring about my answer as I said, "He had brain surgery." I thought grumpily, Let him consider that the next time he asks why a child looks different.
Actually, the shunt doesn’t really make Jacob look that different. (And, I’ve since gotten better at answering people’s questions without being grumpy). But really, the shunt doesn’t even show now that the bandage is gone and his hair has grown. Sometimes Jacob seems just like every other eight month old baby.
So, why would I want to advertise that my child is different on a blog?
It’s the times when Jacob doesn’t seem like other babies that I’m thankful I haven’t hidden his birth defect on my blog. In fact, writing things in a positive light on helps me remain cheerful, despite the fear and uncertainty that I often feel. I love sharing Jacob’s accomplishments and the kind comments of friends who are cheering him on!
Through my blog, I have met several other parents of children with spina bifida. I read about their children, they read about my child, and we all benefit. From giving and receiving sympathetic comments to simply learning about situations we might encounter someday, blog surfing has taken on a whole new meaning for me. Before I call the doctor with all my (sometimes silly) questions, I can often find the answers I need on Collen’s blog, Sara’s blog, and Jessica’s blog.
Reading about others’ experiences was also extremely helpful while I was pregnant and devastated with a scary diagnosis. My blog reading taught me that children with spina bifida are not usually mentally delayed, and often overcome their physical limitations. Most importantly, I learned that though some limitations can’t be overcome, these children and families looked happy!
So, hoping that I could help someone else, I carefully chronicled everything our family went through to get Jacob here (including fetal surgery and being part of a study) and what happened after Jacob was born.
My blog has a whole new purpose. Before all of this, it was just a way to keep in touch with family. Now, it's part of a large network of spina bifida blogs, where families like ours share their day to day experiences, their ups, downs, joys, and sorrows.
Most parents of children with disabilities feel they were given a special child for a reason. I am one of those parents. My Jacob is a light to everyone who knows him, and he has inspired many already. It is our hope that his life will continue to touch others as we share our experiences on our blog.
Read Nicole Dyer's blog here.