August 26, 2019

Dear Ben, It’s Been Four Years

abby_admin ALS, Disney, Grief, Uncategorized 4 Comments

Dear Ben,

Today marks four years since you left this world. Four years have passed and it is still such a difficult day. I thought that I would go to Central Park to look for the turtles but I have learned not to make a firm plan for the day because I don’t know how I will feel.

I woke up in tears, but got dressed and walked to the park. It was nice that the weather was on the cooler side. I looked down from Belvedere Castle and only saw one little turtle, which was disappointing There were only a few turtles by the Bethesda Fountain, but when I saw them poke their little heads up, it was still a comfort. I don’t know if there was a message in the lack of turtles. Is it that they think I don’t need them? Were they not expecting me because of this anniversary date? What do you think, Ben? I’m sure you were there.

I did bring a lot of change to toss into the fountain. I still like to make wishes. I made wishes for myself and for people I love. I always make the same wishes. Maybe some people would be disheartened, but I still believe they will come true.

On my way home I stopped at the “Imagine” mosaic by Strawberry Fields. Of course, as I strolled, I listened to Beatles music and Disney theme park music just for you. It was a rare time that there was not a line of tourists waiting to take their pictures. All I could think was to imagine a world free from ALS, a world free of all disease, really.

I checked my watch all day remembering the exact moment that we all gathered around you, saw you separated from the vent, and that moment when you left. It was as you wished it, with love and music. We even said our vows. It’s so difficult to think of that day as the day we took our vows and also as the day we said good bye. I feel a combination of devastation and satisfaction that you had such peaceful farewell. It was a lot of work, but it gave me purpose and it touched my heart that everyone came together as they did, even people at the hospital who did not know us well but who quickly came to love you. Sometimes I wonder and worry if you are at peace with all of it. I hope you are.

I came home and sat with Tinker Bell. She didn’t know you, my dad or Disney. She doesn’t understand my sadness. She just watched me, seeming to know that I wasn’t myself. She’s a sweet girl but we don’t share that history. Maybe that’s a good thing. We are creating our own new history and memories. Still, it’s a lonely feeling. Rest assured that I show her your pictures on the throw and we both say good night to you each night.

I decided to watch Disney’s Tinker Bell’s Pixie Hollow Games today. It always made me chuckle to come home and find you watching it. No, you weren’t really so macho before you met me! I loved you for it!

When I plugged in a thumb drive to watch the film, the first video that came up was a video I made to accompany the song One Dance, which has much significance for me at this time of year. I miss being able to dance with you and I remember how that song was the shot of reality that we would never dance, you would never come home, and you really were soon going to leave. I had a good cry and then watched the Tinker Bell movie. It did make me smile to see my Tinker Bell cat sit in front of the television and watch Tinker Bell the fairy. I couldn’t get her picture because she kept watching me as I moved. I know that you think I’m like Boo chasing Sully when it comes to our cats!

I finally crawled into bed and put on one of your absolute favorites, Monsters, Inc., surrounded by your plush Sully toys and the Monsters, Inc. throw. There is a scene where Sully is looking at the one piece he kept from Boo’s door that completed the door and made it possible for him to go back and see her. That scene never fails to make me cry. If only there was that one piece that would allow me to open a door and see you again. Maybe scientists will soon find that piece that will solve the puzzle of ALS and put people back together.

Once again, I have been watching the videos I made and looking at our many photos. There are so many wonderful memories. Even the photos where the ALS progression was obvious are still filled with the joy on your face. We were very lucky to have each other, even in the lousy times.

I still love this video that I made for the first anniversary of this day. It still captures the love and good memories.

I want you to know that you are always with me in my heart. You are with me in my new adventures and I know that you send me messages.

I love you to infinity and beyond and I miss you every day. I hope you’ve been walking, running, eating and playing your music. It would be one of my dreams come true.

Love,

Abby