In the United States, Spina Bifida affects approximately 1 in 1000 pregnancies. This incidence doesn’t sound as rare as one might think, but it is important to note that in many of these cases, the baby will have Spina Bifida Occulta, which is the least severe form of Spina Bifida, and generally causes no complications or symptoms. So, of that number, incidence of Spina Bifida Myelomeningocele, which is the most severe form of Spina Bifida and the one that Clara was diagnosed with, rates are lower. Furthermore, many cases of Spina Bifida are related to larger genetic disorders, such as Trisomy 18 (Edwards Syndrome). In our case, blood work showed no such genetic disorders, meaning that our specific case of Spina Bifida was likely just a simple physical mutation. A fluke.
You might say we were just unlucky.
To that, I would reply “No shit.”
What this unluckiness means, however, is that something terrible, rather unlikely and somewhat rare happened to one of my children. This sentence is important because it is comprised of all of my worst, most anxious nightmares.
Before we lost Clara, my anxiety disorder was under control. After going undiagnosed for 2.5 years, I had finally gotten myself to a great therapist and had been working hard, using Cognitive Behavioral Therapy, to get back to living my life without the shadow of paralyzing fear.
Losing Clara, and the reality of it being to a generally unlikely cause, was like rolling out a red carpet for my anxiety to return. Most of the work that I had been doing in therapy was reinforcing the improbability of my fears. I was convincing myself of the irrationality of it all. The problem is that when you conquer anxiety by convincing yourself that your fears are unlikely, and are then confronted by an unlikely nightmare coming true, well, it’s easy to see how I very quickly lost control of my mood disorder.
The way that my anxiety works, is that I am, and have been since the day he was born, absolutely terrified of losing my youngest son. Every cough, every fever, every bumped head is enough to set me into a tail spin of fear about what might be happening that I cannot see, and cannot control. I am terrified of lurking, undiagnosed illness. I am paralyzed by thoughts of the unknown future. In fact, I have a very difficult time dreaming of my son’s future, because I have trouble trusting that it will be full of wonderful things and not certain doom. I know. It’s awful. One of the techniques I am using to combat this fear of the unknown future, was given to me by my mother, who had the exact same problem when I was a child.
SCIENCE BREAK – Mood disorders such as Anxiety and Depression are generally thought to have a hereditary link, and people with parents or siblings who suffer from them have a much higher likelihood of experiencing Anxiety and Depression themselves. What’s more, researchers at Johns Hopkins conducted a small study a few years ago which uncovered that when specific alterations are present during pregnancy within two particular genes, they were able to reliably predict that a woman would develop postpartum depression. We still have a lot to learn, but one thing that this does tell us is that if your mother experienced a postpartum mood disorder, such as PPD or PPA, you are more likely to develop one yourself. This isn’t a doom and gloom message, though, because what this knowledge does is empower you and your doctors to be on the lookout for symptoms of postpartum mood disorders. When you are aware of a possible genetic pre-disposition, you can catch the signs faster and begin treatment sooner! Knowledge is power!
Back to our regularly scheduled blog post…
Anyways, my mother told me that she used to practice a specific meditation when I was young, which helped her to cope with the fear of losing me. She simply imagined me as an old woman. She would close her eyes and imagine what I might look like as a grandmother. She imagined what I might sound like, and what things I might like to do. It sounds simple, but it’s not! So far, I have only been able to imagine my youngest son as a middle aged man. I have been slowly aging him in my mind, however, and eventually I am sure that I will be able to picture every wrinkle on his face. For the time being, I imagine him as a 30 something, with 2 kids and a loving partner. My son is obsessed with baseball and does seem to have a bit of natural talent, so I like to imagine him as a professional baseball player. A pitcher, specifically. Sometimes, I close my eyes and imagine that my husband and I are at one of his games, sitting down the 3rd base line, with both of his children, our grandchildren, in tow. His children have white-blonde hair, just like my son, and in my mind we are joined by his wife (though I’d be delighted with a Son-in-Law, too and don’t mean to assign a sexual orientation to him, I just keep seeing a female partner), whom I love and get along with grandly. Sitting just above the dugout, we are, the five of us, cheering him on as he approaches the mound, fit and strong and gorgeous as the day he was born.
I can picture this so easily, and the more I practice, the closer I get at being able to imagine him as an old man. This technique helps more than simply working to convince myself that my fears are unlikely. That argument has rather lost its potency after our experience with Spina Bifida. Instead, I am teaching myself to trust that the future holds wonderful things for this child, my beautiful youngest son.
So, while I may have lost control of my anxiety after losing Clara to Spina Bifida, I am working hard to regain the upper hand.