Have you ever had to try and make decisions based on something unknown? Sounds kind of impossible right? How could you possibly make an informed decision about something when you don’t have all the facts? You don’t have all the answers or information. Imagine how terrifying those decisions become when you're making them about your child. As a mother, you always want to make the best decisions possible for your children. Let me be real with you, the majority of the time I am not quite sure the decisions I make for Owen are the right ones. A lot of the decisions I make are based on what information is currently available, and that information is limited.

Uncharted Unknown Territories

When I talk about the lack of information on Beckwith-Wiedemann syndrome that is in no way discounting the tremendous work my son’s doctors have done in terms of his care. The Children’s Hospital of Philadelphia and their BWS research team are the best there is and I could not be more grateful to live where we do. But let's face it, they still don’t have all the answers. Owen’s syndrome was discovered in the 60’s so there is A LOT of work and research to still do. So if I go to Owen’s doctors and ask them a question that there is no research on yet, the answer is - no our research doesn’t show that.

For example, Owen gets constant chronic upper respiratory infections. He has been hospitalized for them several times, but right now research shows no correlation to BWS. Even though so many BWS mothers say that their child struggles with the same issues. We also have questioned behavioral issues related to Owen’s syndrome. Again, there is not enough research yet to suggest a correlation. There are so many unknown things that make managing and navigating his rare disease so difficult.

Why do we wait to be effected to care

I am normally not a nervous mother. I am usually very confident in the decisions I make for my children. But with Owen the tables have turned. When there are new outbreaks such as the COVID-19, I instantly feel stressed and overwhelmed. With how quickly Owen picks up an upper respiratory infection, the unknown of a new virus and its effects on him stress the hell out of me. It’s not just the unknown that bothers me, it’s all the efforts that are exhausted on trying to immediately figure out how to control and treat coronavirus. What about the over 7,000 rare diseases that need the same attention? Why does something have to kill people for there to be an urgent aggressive need to control and manage it?

I guess I just wish that those who struggle with silent illnesses and silent diseases got the attention they deserve. Why do they have to get incredibly sick first for people to care? I hope that with my voice and the voices of others we can change that. I don’t want other mothers to feel the stress and anxiety I feel when I have to make decisions for Owen that are blind. It is a horrible feeling. God forbid I make the wrong one, Owen is the one who has to pay the price and I am the one that has to live with the decision I made for him. Sit on that concept for a second, I’m sure it will make you uncomfortable.

Decisions & their consequences

The finality of the decisions we make as parents is stressful. We try and make the best ones we can and I know they won’t always be the right ones. I know that as a parent, I am flawed and I will make mistakes. The difference is, those mistakes shouldn’t be ones that could cost my child their life. It sounds dramatic, but that is the reality of rare diseases and their unknowns. Sometimes the only way to find something out is to see the after-effects.

One thing that has been said a lot during this coronavirus outbreak is that only certain classes of people are at high risk for the virus. I hate it when I hear that. We say only has if it's supposed to bring us all comfort. But what about the PEOPLE that make up the “only”. People don’t seem to care about the “only” until they become one of them. Owen is one of those “only’s”. If Owen had COVID-19 it could very well be fatal. Because of his enlarged tongue, his airway is easily compromised. An illness like this for him could completely shut down his respiratory system. Owen does not even handle the common cold with ease. He was hospitalized last year when his cold turned into pneumonia and put him in respiratory distress. 

For the good of everyone

So before you judge a mother or anyone that is dealing with a rare disease, research what they are fighting. Try and understand their struggle. Learn about what they are going through. So many times mothers are called crazy when they speak up and advocate for their children. Why?! They are doing exactly what a mother is supposed to do! Try and understand why so many people are worrying about COVID-19, and why for the “only” people, social distancing is crucial.



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