Today is Rare Disease Day. A day I didn’t know existed until recently, nor did I understand its significance. Rare diseases do not always receive the same press, funding, research etc. as more common diseases because the affected population is smaller. Family members of those affected by rare diseases end up becoming advocates for and educators about the disease affecting their loved one with doctors, school, insurance companies, etc. Often there is little knowledge or treatment of rare diseases. So February 28th is set aside each year to raise awareness and knowledge about rare diseases. Peter is our rare disease hero, and I will gladly learn everything I can about our particular rare disease and advocate for a treatment or cure.
If you are interested here is a good fact sheet on the rare disease that affects Peter. https://amicusrx.com/wp-content/uploads/2020/08/guide-to-batten-disease.pdf
Recently I was a part of our community’s Ash Wednesday service. As people went forward, I began to wonder how many of those receiving ashes would transition to ashes and dust before the next Ash Wednesday. We often talk about not knowing what tomorrow will hold and this is true it is also true we do not know what the next year will hold.
Sometimes I struggle with the ashes and dust part of our reality, specifically Peter’s. This time last year our biggest struggle was learning to do life with Peter’s diminishing vision and not having answers to why. Now we have answers and vision loss is only the beginning of the difficult things to come. We have made shifts in how we live life, parent, and spend our time and resources. Shifts that help to focus on the present moment and not get lost in the what ifs and whens of the future. I will be honest some days I am really good at that. Other days I struggle, I struggle with expectations, I struggle with planning for the future, I struggle with grief over what is to come, I struggle with anger, and a host of other emotions. I am learning I am needing to give myself space and time to be there with those emotions, but I cannot stay there. If I stay there then I am robbing myself of the present moment. Worrying about tomorrow robs today of my mental presence, getting angry about the situation steals my focus from the life and memories happening right now.
After reading a book of another mama’s story of her journey with her two sons with a different version of Batten’s disease I decided to have a phrase or a mantra or whatever you want to call it. Here is the link to the book. https://a.co/d/0AFpkkP
My phrase is “Choose Joy”. We always have a choice in how we look at a situation, in how we handle a situation, on how we remember something, I am striving to remember the joy of the past moments, to choose joy in my perspective of what is happening in the moment. I promise it is a work very much in progress. Sometimes the furthest thing from my mind is joy. However, when I am intentional in allowing God to change my perspective, there is a peace that comes, there can be joy, happiness, and laughter even in the midst of the hard and difficult times.
Jacob is mobile now; he is rolling and backwards scooting all over the place. He has even started playing hide and seek. See if you can find him in the picture below (I promise I always knew where he was and he was safe). He is still toothless but very much teething. He loves to watch his brother and our dog.
Peter is doing well, continuing to learn Braille, and is doing well in school. He is ready for the warmer weather so he can play outs
ide more. But also wants it to snow so he can go sledding. He has written a book and we are working to get it published.
Until next time – Be intentional about choosing joy no matter what life throws at you.
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