Motorcade, don't we wish

As I was driving home from one of our many appointments, I was stopped in traffic by a police car blocking the road. I had heard that the president was coming to the area; I just didn’t know that it would be in my path. I began to think about the current president and the nominees for the future president. Which brought me to think about Sarah Palin and her baby who has Down Syndrome.

My mind wandered to a thought, how would a vice president be able to attend all the doctor’s visits that are often needed for children like ours or those with a diagnosis? An everyday average person like I, have no idea how this would work. Would there be a motorcade every time they attended a doctor visit? I picture this motorcade going down the highway and as they approach the building you see it surrounded by police officers. As this thought went through my head, it isn’t much different than what we wish it were for us. When we leave the hospital and our world is turned upside down, we wish the world would acknowledge our pain. Wouldn’t it be nice to have a motorcade to escort us home when we have just been given bleak news or spent several days in the hospital, letting the world know what we have just experienced. Only we experience the very opposite, the world continues as it did before. People walk past you and don’t even notice you. People drive by talking on their cell phones, not realizing the life of others.

Being aware of this feeling, sometimes as I’m driving down the road or walking down the street, I think about the families that may be in the hospital or who may have just lost a loved one. I then think of the people who are going past and what they may have experienced, that brings me to smile and say hi or hold the door open for someone. Just doing something simple to a person that may have been through something hard, may make their day just a little bright. And since we can’t see it on their forehead, we should treat everyone as so.

Our Hope

As we were sitting in the ophthalmologist office the other day, while the doctor was finishing up writing in the chart, I asked that the reports be sent to me as well as the pediatrician. I went on to tell him that I was now collecting all reports as we go since we have had difficulties with gathering records to send to the NIH and I talked about the whole undiagnosed situation that he was well aware of. He went on, trying to choose his words carefully, about having too much hope for what a label could do and in the end the child will still be the same child. This was the perfect time to say, I’m well aware of how easy it is to get your hopes up and when a diagnosis is made, it may not be a fix or a cure. I then handed him a few brochures and asked him to hand them out to families in similar situations, he was very appreciative of the information.


As I was driving home I began to think about this brief conversation and how it was for us in the early years of being in the undiagnosed world. When we first learn that our children have some type of undiagnosed condition, we tend to search high and low for answers. We will do anything just to learn what is going on with our children, in hopes that we can do something about it. Whether it is a cure or just helping the situation, the question is how likely it is that there will be a cure or help when a diagnosis is made. In my knowledge, I don’t think anyone has an answer to that. When you are living it you want to think that the odds are in your favor and if you would just find the diagnosis everything will be alright. Though in reality, the end results may not be alright.


The outside world cannot seem to understand this hope that we have, and sometimes even we don’t understand what this hope is doing. Without knowing for sure what the outcome will bring we have to have hope that a diagnosis will help, but at the same time we need to be realistic that we may find out something that we didn’t want to know such as; the outcome isn’t good or there is no knowledge on that diagnosis. But even if that is the case, there can still be hope. Hope for research, hope of gaining more information and hope for being better prepared for what may come.


In my experience as my child gets older the hope of a diagnosis changing the outcome becomes less visible. I believe there is a natural progression of this hopefulness. This progression is unique to each one of us and our situations. We should allow this progression to occur just as it is meant to and never be made to feel bad for having too much hope or too little hope.