9 Years: Love Is A Song That Never Ends

ALS,Walt Disney World
A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

My Dear Ben,

Today is nine years since you left this world. Once again, I am on an Amtrak train marking a milestone date that honors you. I had a lovely visit with Doris and Damian, and now it’s my visit with you. It gives me peace and comfort on these occasions to do something that you loved and that so reminds me of you and good times that we enjoyed. I wish we could have embarked on other journeys together, but please know that I take you with me in my heart.

I’m listening to one of our Disney albums as I type. But, the song that is most in my head is the same as last year on this day, Love Is A Song That Never Ends. It is especially fitting because on August 13, Bambi celebrated its 82nd anniversary.

Certainly, some people would say that after nine years, these dates should not continue to hit me so hard. I guess I don’t look at it like that. Love Is A Song That Never Ends. I am not paralyzed with grief anymore, but I am intentional about how I honor dates that are important. This was an excruciating day nine years go. Saying our vows at your bedside. Then, convening people who loved you to stand by your bedside as you separated from the vent and left the world, surrounded by love and music. Those are not memories that will fade. Nor will the memories of all the love that day. For you and for me.

Still, here on the train, typing on my tablet, I am in a zone of good memories. Yes, I’m shedding some tears even as I type, but I think about how happy you would be staring out the window, and how you would love that I am using an iPad that I researched and purchased, the way you taught me to do.

And, here I am. This was a summer where I made my plans and did not struggle with your absence. I accept and embrace that I’m on my own in these things. I made my annual visit the Chicago area and fully enjoyed my time with friends who are like family. I returned to one of my very favorite places, Georgia Aquarium, which I had not visited since the summer before COVID. This is a particularly significant place because going to this Aquarium was one of the things I chose to do after you left that was completely new and “me.” Doing the animal encounters is something that gives me profound joy. Since you and I were penguin lovers, meeting penguins was a difficult encounter because I knew how much you would have loved it, so when I returned the second time, I did not do that encounter. This year, I resumed it, and it was quite fun. Although they do entertain me and are such delightful characters, I do not gravitate to the penguins the way I did with you, and I think it’s because it was such an “us” thing and simply doesn’t feel the same. The sea otters and beluga whales are my passion. They are my own. I know you would enjoy them, but those are my new special memories. I can’t help but wonder if you and my dad somehow intervened so that I got to feed and play with sea otter Gibson and beluga baby Shila. Gibson has had my heart since I watched on social media as he was rescued as a teeny pup. He is such a special boy, even adorably sucking on his paw as he floats on his back. I am still feeling the thrill that I got to feed him and whisper, “You’re my favorite, but don’t tell the others!” Shila has had my love since she was born to Whisper 4 years ago. I love Whisper, and Shila was as endearing, playful and fantabulous as I had expected. I do like to think that you and Daddy made it happen that she was the beluga that I got to work with. Of course, I have always loved animals, but I have discovered how much interacting with them feeds my soul. I seek out these opportunities and will continue to do so.

This is Shila.
A better look at Shila.

The hard parts are the things we loved together or that you especially loved. The dolphin show choked me up because I will always remember you at the first dolphin show we saw at Mystic Aquarium, our first weekend away. It was the first dolphin show you’d ever seen and you were enthralled. It was during that show that a little penguin wandered in front of the tank and the waddling delighted both of us. It will always break my heart that you were deprived of so much life. That we were deprived of time together. The time we had at the end of your life allowed us to say and express so much. But, then it was over.

Spending time with friends and doing some new things is something I treasure. So, I see that as growth. Still, you are always there. I guess some people would say that’s not entirely healthy. Maybe they have a point. It probably does keep me from really opening up to looking for a new relationship. However, I see progress. I do not feel the guilt that I used to feel about enjoying life, or, even living life. I do feel sadness and I often feel alone, rather than lonely. I think my biggest struggle is that the people I was the closest to in my life all now reside in my heart. So, I need visits like today.

I believe that you would be happy with all of the writing I’m doing. You know I always wanted to write children’s books and I’ve made a lot of progress with my picture book manuscripts. I love the creativity and I am inspired by the people and new friends that I have met in the progress. I have delved into previously untapped parts of my spirit. When I finish this post, I am going to read through the manuscript I wrote based on this blog. Throughout my career, I have had a lot of articles and other pieces published, and you were always my champion. It is exciting to continue to develop my skills and tap other writing styles and areas of imagination. I actually spent a considerable amount of time this summer alone and writing, but not really feeling alone in those writing sessions. Combined with travel and time with friends, it has been one of my most lovely and productive summers. That, too, is progress. After you left, summers were spent reliving your last summer at Mount Sinai Medical Center. I struggled with how to balance those memories with stepping into life. I think that I have finally found that balance. Am I late? I don’t know. As I tell other people, everyone has their own timetable.

Last week, a music album was released, The Impossible Dream. It was made by an actor, Aaron Lazar, who has ALS. The Broadway community rallied around him and a video was released of many performers singing The Impossible Dream. Listening to that song, one of my favorites, but in the context of ALS, wishing for a cure, and your bravery, as well as that of all those who battle ALS, had me crying as I have not cried in a long time. This date looming only amplified my emotions. It’s all okay. When I think of people who would not hesitate to tell me to stop or that it’s been too long (or who would say it behind my back), I say that I am who I am and I feel what I feel. As Winnie The Pooh would say, “How lucky am I to have something that makes saying goodbye so hard.” I guess another area of my growth has been a stronger ability to dismiss and not dwell on unhelpful, unenlightened commentary.

The important thing about today is the reminder that Love Is A Song That Never Ends. I may choose different ways to honor you, but there will always be love for you and you will always live in my heart.

As always, my hope for you is that you are in a place where you are walking, running, eating, singing, playing music and surrounded by love, especially the love that you feel coming from me. I miss and love you every day, to infinity and beyond.

Love,

Abby