I Wish My Instinct Was Wrong

To say life is a challenge right now would be an understatement. It is overwhelming, scary, sad, and overall wreaking havoc on my mental state. When you have children, you know life as you know it will change. You understand it will not be easy navigating through their different phases, especially when you have multiple children at different stages of life. My mom always told me I didn’t come with a manual and that raising children would be hard. I never once thought it would be easy, but it never occurred to me it would be this hard. Although I never thought I wanted children, I went on to have three amazing kids that I love more than life itself. While all of my children presented me with different challenges, that I thought I was handling with the best of them, nothing prepared me for the last few months. When my youngest daughter, Allison, was just a year old and started walking, we noticed something was a little off about the way she toddled around. I already watched two children learn to walk and my mommy gut told me something wasn’t quite right. After several months of visits with different specialists and wishing for an answer, she had a brain MRI and we received that answer. I wasn’t even out of the hospital parking lot when I got the call from her pediatrician informing me she had a Chiari malformation.

I, like most moms, would google my child’s symptoms, imagining the worst, while hoping for the best. I had come across this term in my ongoing research of possible diagnoses, but I was not really expecting her to have it. They just confirmed one of my worst fears, something was wrong with my baby girl. In layman’s terms, her brain is being squeezed out of her skull and being pushed down into her spinal canal. I cried. I cried a lot. I couldn’t understand how this was happening. Then I felt some form of relief, relief that we knew what it was and now we could figure out how to help her. My first step was to find the best of the best in this field and make an appointment. I joined Facebook groups, read scientific papers, and googled everything I could think of. It started to occur to me that other things she was doing were actually related to her condition and I missed it or just wrote it off as something toddler related. She had fits of screaming, for 30+ minutes sometimes, and she couldn’t bear to be touched during these fits. She was constantly rubbing her head and pulling at her hair. My baby was in constant pain, and I didn’t even know it. How could I? She wasn’t saying many words at this point and pain is not expressed the same way in children as it is in adults. I was also busy caring for two other children, my husband, our home, and working part-time. 

As if dealing with this news and all of the emotions that come with having a sick child isn’t enough, just two weeks later, I myself had been diagnosed with a Chiari malformation. How could my daughter and I have the same thing? Did I pass this on to her? How did we get this? I had met with a geneticist after her diagnosis and he told me that less than one percent of cases are genetic. Well, here we are, the less than one percent group. I had passed this on to my daughter without even knowing that I had it. And the kicker was, my other children had a 50% chance of having it. 

While most people’s first thought when I relayed this information was, “well you’re fine, so maybe she’ll be fine”, that wasn’t really the case. I’ve had symptoms since childhood, and I can clearly remember being a young child and crying on the floor because of headaches. I can remember countless trips to doctors with no answers. For the last 13 years, I’ve been living in almost constant pain. I wake up every day in pain and I do not want that for my children. That coupled with the fact that Allison was already experiencing more symptoms than I ever did, solidified the fact that we needed to do something for her, as soon as possible.