I am here.
Here I am, I’m here. I can feel myself here, I feel myself here, and I see myself here. But why am I here?

Washington DC is a beautiful place. I’ve always liked DC for its bold clean architecture. It’s solid in aesthetic with vertical and horizontal lines, all constructed at 90° to one another. Of all the places in the world I am here, for you.

Just nineteen months ago I was at home with you. We were living everyday life as husband and wife, and we were happy. Now, I’m here in Washington DC and sadly I’m without you. I didn’t know what I would do without you, I was lost. Now find myself in informational meetings, periodic training, on-line support groups, and in a very quiet yet occupied space. The purpose? You are the purpose, my purpose.

I remember the first time I had ever been to DC, walking around all the historical buildings. It was before 9/11 and although I knew security was all around, I was still able to stretch my arm in between the vertical bars of the gate that surrounded the back side of the White House. The area of vast grass which made up the lawn always seen on television with its overlooking porch. I wanted to bring something home for you, something real and tangible from me being right there. As I reached beyond the fence posts and touched the White House grass I wondered just how many secret service men were watching me and hoped I wouldn’t get caught. I proceeded to pluck several blades of grass from that lawn, then slowly withdrew my arm and placed the grass deep in my pants pocket. Feeling all eyes on me I slowly walked away and went about my business.

DC, as I had often shared with you is a very cool place. I knew you would really like it. I talked about being surrounded by all the awesome architecture. Structures and history I knew you could appreciate. You expressed to me a number of times how you wanted to go and see Washington DC, and I assured you that one day I would take you there.

But that never happened.

We never made it to DC together and you were never able to make it a solo trip. I regret not ever taking you on a trip to this historical location. We just never got around to making the trip. I’m sorry.

As I walked the streets of DC, navigating myself around all its history and significance, I couldn’t help but think about your longstanding desire to one day achieve your goal of coming to this place. In my somber and contemplative thoughts, I realized that while I was never able to bring you to Washington DC, you had now brought me. I was in DC for a very specific reason, one that I would not have returned to this location if it weren’t for you. For what had happened to you, for what took you away… from me, took you away from everyone in your life. From what removed you from your life on earth.

You brought me here Irene. You brought me to DC, and I am grateful for this gift. One that I would have never experienced if it weren’t for you. What love you have.

The debt I owe to you is carried out by my advocacy for the disease that stole you. I will walk every walk and continue to raise money in support of further research and ongoing study. I will visit the Capitol each year and participate in CJD Advocacy Day. I will meet with, and talk with legislators who make the important decisions on which public initiatives to federally fund. You will bring me back to DC year after year, and I will honor your memory always as my ask, my fight, is for you and for all those affected by the disease CJD.

You are my inspiration, my drive, you are my purpose.

The wonderful thing about Tiggers, is Tiggers are wonderful things. Their tops are made out of rubber, their bottoms are made out of springs. They’re bouncy trouncy flouncy pouncy, Fun, Fun, Fun, Fun, Fun! But the most wonderful thing about Tigger’s is, you’re the only one! You’re the only one Snuggles. Woo-Hoo-Hoo-Hooooooo!

Now however, I sit alone. An unplanned and uninvited situation. Here in unchartered solitude, with an unexpected trajectory in life. Alone, without you…here.