As a parent with young-onset Parkinson’s disease, I’ve been adjusting and adapting to the bumps and detours of my life. One of those adjustments has been our expectations for family events, from milestone events to everyday activities. With young-onset Parkinson’s, we hope our health doesn’t rob us or our family of the joy of the moment.
But what is hope? Over the past six years, my definition of hope has evolved into one of trust.
Hope as trust
Trust who? That is up to you. It could be God, Mother Nature, or the Universe. But hang on tight to whomever or whatever you choose. It’s going to be a bumpy ride.
I am going with the big guy upstairs and trusting that God has put me where I need to be in every aspect of my life, including my health. (Although I don’t always agree with the plan.) I don’t know how long my disease and the medicines I take will allow me to maintain my current lifestyle.
Maybe that uncertainty gives me a different perspective about how I view 2020, a year that has become a very long detour. I am trying to live with caution while I navigate the detour and avoid being paralyzed by a roadblock.
Find joy in the journey
Our family had some memorable moments this year, although none played out the way we had envisioned due to the pandemic. Among them, my son got married, a freshman year of college was cut short, and we had some family trips.
As parents, from the day we saw our first sonogram to the day we held our child’s hand for the first time, we had a vision of the events that would occur in their lives. I can’t speak for everyone, but let me just say this regarding 2020: “This is not it!”
Yet, while the circumstances were not ideal, I cherished each moment. My health cooperated. My body cooperated. Our family successfully navigated the potholes of the current crazy world.
We have been weaving my diagnosis into our everyday life, and it has made us keenly aware of the need to adapt. In doing so, we view each milestone and our journey to get there as a blessing. For me, each milestone reinforces my hope that I will be there for my family, even if it’s not the way I envisioned myself all those years ago.
As I told my son, Adam, during our mother-son dance on his wedding day, find joy in the journey, even when it’s not the one you had planned. Good things are happening. Don’t let the fear of the moment eclipse the joy.
So, while we want to put 2020 in the rearview mirror, pause and drop a note to Santa and give him an idea or two. Most of all, I hope we all remember that the peace and joy of the holiday season are more powerful than the chaos that surrounds it.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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