Recently I was asked to speak for Rare Disease Day, which is February 28, 2021. The most recent request was by The Jett Foundation which I spoke on their event panel Friday. I was asked to answer this question: “What does it mean to you to be rare?” It took me a while to answer this because I feel there are so many ways this question could be answered. It could easily be answered with the definition of rare or it could be a deep dive into the feelings of having a child diagnosed with a disease that is only seen in 1 in 5000 live births. Of course I decided on the latter. I emailed them back with the following answer: Being rare to me is having a life changing event where you are not only different because of a characteristic or diagnosis but that difference changes your life in a way that others would not normally have experienced.
As a family with a rare diagnosis, we have lived life as tomorrow is not promised. We take it slower and appreciate even the smallest of experiences and yet build in experiences to make the most of every moment for not only our "rare" child but also for our entire family.
As I read my answer again I think of how so many people will say they want to take it slow and want experiences not things like we do. But as I read through posts on social media, I get frustrated because of families complaining of the smallest of things…masks, in home learning, virtual doctor appointments, and I could go on and on forever. When a rare family reads posts like this it feels like our life changing worries of wheelchairs, heart issues, lung issues, medications, insurance, and death are minimized. I am definitely not saying that people should only worry about rare individuals but I think sometimes a different perspective is a good thing. Unfortunately in this day and age many don’t want to see things from another side.
I want to put this out to the universe...from my perspective being rare to me is a blessing. Initially upon diagnosis I questioned why we found out Wyatt had duchenne at such a young age. Rarely boys are diagnosed at 1 y/o. You see most boys are not diagnosed til the age of 6. In 2007, I felt we were robbed of his innocence and the toddler years where he didn’t have symptoms of the disease. Today I am able to look back and know that there is a reason he was diagnosed so early. We have been able to see amazing specialists, participate in multiple clinical trials and meet amazing people that we may not have met if diagnosed at a different time. We were able to plan the next steps to grow our family...because we wanted another child but wanted to decrease the chances of our next child having DMD. We moved and built a house that is wheelchair accessible in a school district that is best to meet Wyatt’s ever changing needs. Also since we knew so early we were able to plan for our financial future, knowing that I would probably not be able to work in an office forever we needed a framework to achieve this. Most of all we have made the most of every opportunity to take time as a family...we go on vacations and trips as much as possible so we can be together without the distractions of everyday life.
I can tell you that perspective is everything and when I feel myself going down that road of why me and why us I change my thoughts and say Why not us...what good can come from this. Maybe that is why my closest friends say I am one of the most positive people they know. I am able to look at situations from a different rare perspective and I highly suggest trying it.
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