National Grief Awareness Day- What Is Happily Ever After?

ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.

Today is National Grief Awareness Day. Of course, for anyone experiencing grief, there is daily awareness, adjusting, and coping. Grief is usually top of mind, and, at least for me, especially in the early days of grief, in those moments that it was not my driving thought, there was guilt to bring me right back to grief.

A few days ago, I posted about the eighth anniversary of Ben’s leaving this world. I posted a photo that I love of Ben in his Buzz Lightyear shirt and holding a little Buzz toy. I am posting it again here. In the photo, Ben is also wearing a button that says “Happily Ever After.” We got those buttons during a visit to Walt Disney World after Ben’s ALS diagnosis. We had no idea how long our happily ever after would be. We tried not to dwell on that.

Since I posted the photo, I have been thinking about how I reconcile Ben’s and my happy ending. Was it really happy? We had to make it feel so. And we did, especially at Walt Disney World. In the depths of grief, I often thought about that. I still do. The ending was far too soon, but there was a lot of joy and love, even in the troubled times. Life was not fair to Ben. It was not fair to us. Still, I am here. Sometimes I am lonely, sometimes I feel very alone. I try to focus on how we filled Ben’s years with ALS with as much love and whimsy as we could. I made sure that he was surrounded by so much love and music as he left. As devastating as it was, the day he left was also beautiful, and I am proud of that. Now, the grief is a result of tremendous love that I was fortunate to experience.

Grief is tricky. It ebbs and flows. It is unpredictable. There are obvious setbacks and sharp pangs- milestone dates, holidays, and special occasions. At least we can brace for those. It is the unexpected things that set me on a downward spiral. Watching a film that has a scene with a loving mother, father, or grandmother always brings me to tears. Ironically, my tears turned to laughter when Ben, knowing exactly what would make me cry, would hand me the tissue he knew I would need without saying a word. Random events, things in stores, sightings, and anything that might pop up can bring a mix of warm feelings about loving memories and profound sadness. I have come to welcome all the feelings because I treasure the memories of my loved ones.

I co-exist with grief, but I have returned to the land of the living. I freely acknowledge that I still deeply feel the impact of grief in many ways, anticipated and unexpected, and that acceptance helps me to go with the flow and embrace the span of my emotions. Being comfortable with my feelings and reactions to grief has also taught me to be a bit guarded around people who tell me how I “should” feel and what I “have to” do to cope with grief.

Today seemed a good day to share these thoughts. I hope that when people understand that everyone processes grief in their own way and at their own pace, there will be less judgment and more compassion. Grief can be managed on our own, with the help of our loved ones, and/or through support groups or therapy. Most important, our feelings are okay, and they are our own, just as were our relationships with those we loved and lost.


Eight Years- Love Is A Song That Never Ends

Walt Disney World, Halloween
Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

My Dear Ben,

Today is eight years. I miss you. Once again, as has happened every year since you left this earth, I replayed in my mind your last day. It still leaves me shaken and in tears. Once again, I was purposeful in deciding how I would spend today. I am returning from Binghamton, New York, where I spent a lovely few days visiting Dorie and Damian. Yes, I spoke of you. I was also accompanied by your baby Sully and my baby Eeyore. I took Amtrak and chose to return today. After all, you loved the train so much. We had such nice getaways via Amtrak. So here I am.

It is important to me to plan this milestone day in ways that honor you and our memories. As I glance out at the beautiful scenery, I like remembering how you enjoyed even the longest train rides to Vermont or Connecticut. I have been revisiting all of my blog posts from this date and listening to our favorite Disney theme park music through my headphones. I observe that in the first couple of years, I spent this day trying to sort through my emotions and come to terms with the grief I felt for you and for my dad. I realize that when I lost you, I was also deeply grieving the loss of my dad. I see that I have come to co-exist better with grief and I give myself permission to cry, or not. I still cannot predict how the most mundane thing will set me back. Today is hardly an ordinary day, and there have been tears, so, thankfully, I have a seat all to myself. At the same time, I am grateful to be on the train knowing that you are here with me as I think about you, us, and my life now. I think that you would love that I am using my new iPad on the train. Actually, it was very difficult for me to choose and purchase this iPad because technology was the thing that you always did. You taught me well, though. I had the skills to research devices. I am thrilled with all that I can do with my iPad, and especially delighted that my writing this while on an Amtrak train would make you happy and proud.

Ben’s baby Sully and my baby Eeyore are my travel companions now.

I think about how I spent this day a couple of years ago at my first Bruce Springsteen concert. He talked about his concerts as a time to visit with the ghosts of the loved ones he has lost. I guess milestone dates like this are my time to devote to visiting with you, even though you often send me signs that you are with me. I am certain that the visit I had from a cardinal in Central Park last week was to comfort and encourage me in anticipation of today. I know you make these things happen. You did say that you would be a grim, grinning ghost!

I wish we could have been on a getaway together. I will always be saddened that you were cheated out of so much of life and that we were cheated out of time together because of ALS. The song One Dance always makes me cry because it was the song that I listened to one evening after I returned from visiting you that forced me to face that you were never going to come home. Although lyrics do that to me, I am grateful for music that comforts me and encapsulates my feelings. Music is also significant because you loved it so much. Please know that I take you with me everywhere I go. You are a part of who I am.

I have not yet decided which of your favorite Disney films I will watch today. No matter what, today may be the day that you left the earth, but it will forever more be a day that your spirit is especially honored and celebrated with so much love. Most resonant with me is that Love Is A Song That Never Ends, from the song of that title from Bambi. Pangs of grief ebb and flow, but the love I feel for you is consistent.

I love you and miss you every day,

Your Minnie, Abby

Ben was doing his best Ricky Ricardo impression. 2007