Life & Love & Lessons Learned

Living with Parkinson’s Disease

The only time I’d ever heard of Parkinson’s Disease, was hearing on the news that Michael J. Fox was diagnosed. I had no idea what it meant. I had no idea what it was.

And then my uncle was diagnosed. My uncle. Mine.

When I think of him, I think of New Hampshire, and the lake we spent the summers on; my mom & dad, brother, aunt & uncle, and cousins. I remember the wood paneled cottage, the porch where we’d sit and talk for hours. I’d sing to the trees, super loud, because hey, nobody was around. Well, besides my brother and cousins who occasionally ran away from me and went on their own adventure.

We’d all climb into my uncle’s van…it was the most super-cool van I’ve ever seen with like, a whole art scene on the side. It was blue & orange…it was wild! It was the best thing about going to New Hampshire – because I knew we’d be going to Canobie Lake Park.

We traveled like a pack. Every ride. Together. Every food stand. Together. I remember my mom always smiling and laughing. She had her brother with her. Having a brother of my own, I totally get that.

My aunt & uncle lived just minutes from my grandparents, so it was a win-win! After we left my grandparent’s house, we’d swing in to see them, if they weren’t already with us. I remember their house…always filled with love. They were always welcoming in those in need, letting them stay with them. They were all about peace & love. They were all about Jesus and the word of God. They were good, kind, generous and examples of His love.

My brother and I would sleep over from time to time, and I remember sneaking out of bed to listen to one of their Bible Study meetings. I loved hearing them read from the bible. I loved listening to their stories of hope, of blessings and grace.

Growing up Catholic, I went to church every Sunday. I sang the songs. I knelt. I stood. I knelt again. But there was something invigorating about their meetings, their music. It uplifted me. I felt a connection like I’d never known before. And I attribute my strong faith to this day, in part, because of what I felt & learned as a child.

As I got older, it was my uncle who came to every school play, every choir concert, every dance recital. He was an integral part of my life. And when I started hosting Christmas Eve, it was my uncle who showed up with the biggest smile, because he knew I’d have baked Grandma’s cookies, and sneak a few extra on his plate.

And then we got the news. Parkinson’s. And soon, his steps became slower. His voice became softer.  The man who would toss his grandchildren in the air, now sits beside them, not speaking, but taking it all in, like an old movie on a reel – frame by frame. He’s recording every second.

A few years back, I wrote him a letter – I needed him to understand the impact he’s had on my life —

How do I tell you in words how grateful I am to you…?

How do I tell you that I am the woman I am today, in part, because of you? I look back on my childhood, and you are there. You are with me on holidays, celebrations, in times of sorrow, and joy. You are guiding me spiritually, teaching me by example how to love, give to others, reach out and always live according to His teaching.

How do I tell you? How do I show you? By living your example. By letting you know that I remember. I remember the fun, the faith, the family…and my hope is to pass that on to my children and be a role model to them, as you both were to me.

And this morning, while watching the Food Network, I saw a commercial for Thanksgiving…and I started to remember all the Thanksgivings we had as a family. Crowded into our dining room – my parents, brother, grandparents, cousins…and my Uncle John.

Once the table was filled with the turkey, stuffing and all things Thanksgiving, we’d sit, in great anticipation of my Uncle saying Grace. Every year, he always seemed to know exactly what to say to bring me back to what was really important. Family & Faith.

I remember his gentle voice. I remember the way he smiled when he talked about family.

And as he deals with this horrible disease, I’ve never once heard him complain. His voice has become weak, so he barely speaks. His steps are guided. He’s changing. And it’s hard. And it sucks. And it’s not fair.

But I know he wouldn’t want me to question why. He would not want me to be angry with God. He would not want me to lose faith. Because he’s a much better person than me. He’s grace. He’s humility. He’s soulful. He’s love.

Kind. Compassionate. Christ-like.

And I realize there are angels on earth. And one of those angels is named, John.

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