I’m not sure what is worse — to know the name of your child’s diagnosis or to know something is wrong and not know what it is. I’ve lived the “not knowing” option for two years now, and I would like to know how it feels to have a name for the collection of symptoms my child lives with. When people ask me what I want for Christmas, my answer is: a diagnosis.
We know something is wrong as new symptoms appear. We see decline and feel helpless about it. Our doctors are running tests, but it is a real-life needle-in-a-haystack situation. When it comes to neurological symptoms, especially when seemingly unrelated, technology is advancing slowly. If our next test doesn’t reveal anything, we will have to wait years to see if science comes up with better tests. That possibility seems hopeless.
On most days, we focus on our therapies and making memories. We fight for necessary equipment and we find ways to adapt our everyday activities. Her diagnosis, or lack of, doesn’t prevent us from working hard and making sure our daughter has what she needs. She is a beautiful, joyful and vibrant child despite the insurmountable obstacles she faces daily.
But in those quiet moments, when I have a particularly challenging day, I long for a name. I want to call this something. Whatever is affecting her body has to have a name. I want to research it in the wee hours of the night. I want to find other parents who have children with this, and ultimately, I want to know if this diagnosis will make my daughter’s earthly life shorter. Knowing has to be better than the constant wondering and searching.