Recently, on my way to dinner, I was approached by a gentleman who apparently knew the people I was meeting. This is something I'm used to when dining at places where I'm considered a regular in my hometown. He walked up to me, as I was carrying Emma inside from the car, and with a kind smile he said, "So this is the baby that is really sick." I was deeply offended and even disturbed that this stranger had greeted us with such offensive words and that he saw no fault in his salutation. After a short pause to collect myself, and to keep from saying the words that initially entered my head, I responded, "No, Emma is fine." He looked confused by my response, but I felt it best not to continue the conversation. I had no desire to try to explain Emma's story to this person whom I felt would never see Emma as anything more than a "sick baby."
I continued to walk into the restaurant, but couldn't get the incident out of my head. Later, he walked by our table and said hello to one of the people in our group. I chose to ignore him and continued to play with Emma. After he was gone, I asked the person he knew in our group who he was and told them about the incident that transpired in the parking lot. They stated they didn't know his name, but they had seen him there before and that he must have overheard past conversations.
This troubled me as well because now I was wondering what was said in those conversations that could have made this man think he could ask that question and not offend me. I couldn't assume that the conversations he overheard gave him that lack of sensitivity toward my life with my daughter. For all I knew, he could have terrible people-skills and have no understanding of social etiquette, but it still made me wonder about what other people I know say when they try to tell others about Emma. Rather than being hurt by the words this man chose, I felt it would be better to try to give the people in my life the words that will accurately describe my sweet baby girl.
First, Emma is not sick. Hydrocephalus is not a disease and is not something you can contract from another person. Hydrocephalus is a medical condition where there is either an overproduction of cerebrospinal fluid (CSF) or an inability to drain the CSF from the brain due to either a blockage or deformation of part of the drainage system in the brain. Some people, like Emma, are born with it while others develop hydrocephalus later in life. That said, everyone that has hydrocephalus is affected differently. In Emma's case, she has congenital non-communicating hydrocephalus - which means she was born with it and the ventricles in her brain do not provide a free passage of the CSF through them. Even another child born with congenital non-communicating hydrocephalus would have potentially different challenges to overcome, and because it is dealing with the brain, the severity of the challenges would be likely different as well. Some individuals will be able to completely overcome some, or perhaps all, of their challenges while others will not. It is unknown what limitations, if any, a child born with hydrocephalus may have. That is why it is important not to place limitations on those individuals when you talk about their future capabilities. You have to allow them to reach every milestone at their own pace and support them on their journey. If you don't believe in them, they may begin to doubt themselves as well, and accept that they may never be able to overcome their challenges and reach their full potential.
At times, it seems to me that some people struggle with knowing what to say or do around Emma. I can understand their apprehension, which most likely stems from fear. Everyone experiences fear, and for a plethora of reasons - I am no different. I have feared many things along this journey with my daughter, but when I see the strength Emma displays every day, my fears subside and I fill with pride. With the support of her family, medical team, and therapists, Emma has consistently improved. She may have to work harder than other children her age to achieve a task like sitting unassisted, but she is getting stronger every day.
