Having a senior in high school means often living in the “lasts” moments. The last first day of school, to the last run around the home track, and everything in between.
The closer to the end of the senior year it gets, it feels like I am just swimming in a sea of lasts. It is a heavy emotional load. Of course, I am happy for him, but there is also a sadness intertwined with that happiness. Separating the two feels impossible to me.
What I have discovered, having gone through this once already, is that following all the lasts are a lot of firsts, which can also be a beautiful thing.
A new normal is quickly approaching our household as our youngest is on the edge of the nest, ready to fly into his new chapter of life. Just like my husband and I are.
Living with a progressive muscle disease, I often live in thoughts of the lasts. When I do things, I think to myself, I wonder if this will be my last time doing this on my own two feet? Will it be my last time cooking dinner for my family standing up? Will it be my last time walking into a store independently? Will it be my last time standing to hug my kids?
Progressive muscle disease is unpredictable. I have many friends who also live with progressive muscle disease and have had their last moments doing all these things. There is no way around ruminating on these thoughts when facing that kind of reality.
As I sat in my wheelchair today, I thought, I am living a lot of those lasts that I once was so fearful of. I can recall a time in my life when I was terrified of what my life would look like when I had to start using a wheelchair more. Yet, here I am, adapting to this new way of life.
I realized there had been a last time when I confidently walked into a store without my cane. Now, that is not a possibility for me.
Living with a progressive disease is a constant awareness of change on the horizon. It can feel hard to settle into a new way because you know that likely that way is not going to last all that long. Preparation for what may come next is already sneaking its way into your thoughts.
Some days, I am aware of every movement I make, appreciating the moment. The smallest of movements, I am grateful for.
Trust me, when the absence of something so important is breathing down your neck, you are going to think about it. More than you would like to.
It can be an incredibly painfully, lonely way to live. That is the harsh reality of it. Most people who surround me just cannot understand the gravity of my reality, through no fault of their own.
How often do we shy away from sharing our vulnerabilities because we fear those, we are sharing these things with will take that as our plea to throw a pity party?
Most do not want a pity party, but rather a party of compassion. Meeting us where we are in our hurts and hurdles.
For as long as I can remember, I would cringe when someone would say things to me like, “you poor thing,” “I could never do what you do,” “I don’t know how you do it.” To which I want to say, I don’t know how I do it either, but each day it gets done.
We live from where we are. We often do not know how we are doing what we do, yet we do it. Sometimes life does not provide a clear itinerary, but more like just feeling around until you get it right.
I know, we will be ok. The lasts are hard and sometimes downright gut wrenching, bring you to your knees emotional pain, but there is always tomorrow. There is always the hope of learning a new way.
As the saying goes, don’t be sad it ended, be grateful it happened. Focusing on learning to interpret life in a way that is empowering is a goal to aspire to as things are changing.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.