August 26, 2026

Eleven Years- Always With Me

abby_admin ALS, Disney, Grief, Uncategorized 2 Comments

My Dear Ben,

Today marks eleven years since you left the earth. It is one of the days that remains difficult. Late last night I recalled our last night in Mount Sinai Hospital’s hospice unit. My memories remain vivid yet also surreal, as they were then. I awoke today feeling sad with the weight of the day. Dolly Parton died yesterday, and hearing talk of it as soon as I put the news on, while also summoning the energy to navigate this day, put me immediately in tears. But, I’m okay with tears.

Summer always carries the memories of your last summer. That has not changed. Having to proofread Pixie Dust For Caregivers: A Disney Fan’s Reflections on Caregiving, ALS, and Honoring Your Story brought all of the memories to the forefront. Still, I was reminded of how right Christopher Robin was when he assured Winnie the Pooh that, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you.”

I am able to immerse myself in life and the present while keeping you close in my heart. My dream of being a published author is coming true—the book will be released in about a month— and I am able to genuinely delight in that. You are the reason I will be a published author. This tangible product keeps you with me always. At the same time, reading my words about my caregiving experience and your battle with ALS conjured the sadness and frustration while highlighting that I have grown stronger and maybe a tiny bit braver. My emotions did, indeed, turn me Inside Out.

I had the wonderful opportunity to return to our treasured Vermont. This was another time that I took you with me while creating new memories with new friends who are fellow writers and my critique partners. I did talk about you and recall our adventures. It did feel bittersweet to be there without you, yet I felt comforted to be in this place that was special to us, and add a new dimension with other wonderful and supportive people. I did buy a little pirate ghosty ghost in the Weston Christmas Store because we so loved that store, we loved Halloween (I still do) and you loved pirates so much. I will never stop hurting for the time that ALS stole from you and from us. But, I know that you are with me. I am consoled by the feeling of your presence. I am also feeling a bit more confident and capable in my life.

I feel like I have reached a point where I embrace my life and accept that feelings of grief are just a part of it. You remain a huge part of who I am, as do my mom, dad, grandma and Ellie. I do like to be intentional when it comes to days like today. I already decided that next year, I will see the new Broadway show, Paddington: The Musical on my mom’s birthday to honor her love of that adorable little bear. I saw it in London last November in her honor, too. For the past few years, I have been on an Amtrak train on this day to honor your love of train rides and our many fun getaways, and I do think that suits my mood. This year, however, I spent the day here. I decided to spend time in Central Park, a place that we enjoyed and a place that has grown to be so important in my life. You were with me as I chose how to spend the day among our memories. I bought berries to bring to the turtles, and I let them know they were from you. I stopped to feed my buddy squirrels as I headed to a place we always enjoyed, the Central Park Zoo. My first stop was the Penguin House. I still have our penguin trinkets and I watched the cuties through your eyes. I also hung out watching the seals as we always did. In the Children’s Zoo, I fed the sheep and goats. You never quite understood how much I loved feeding the animals, but you always indulged me and we shared a lot of laughs. Animals make me so happy, so this visit was a way to conjure you and also give me peace of mind and joy on a difficult day.

I took myself to lunch at the diner you loved, where we had so many meals. I was keenly aware that rather than making me sad, it felt good to be there and to be able to acknowledge things that were ours, even though you’re not physically here. I guess that’s another shift in grief.

Finally, I settled in at home and watched Monsters, Inc. with your Sully plushy beside me. I wish I was as lucky as Sully and could find that little piece of the door that would bring you back to me.

Arranging these days allows me to feel close to you and to remind me of Christopher Robin’s quote. You’re always with me. I spent a lot of time feeling like I was keeping myself in a relationship that no longer existed because you’re not here anymore. I think it gave me a sense of security. I’m doing a better job of keeping you in my heart while accepting my life on my own. But, I miss you. I love you. I hope that you feel my love, not just on days like this, but every day. And I hope that wherever you are, you are eating, running, playing music, and doing everything that ALS took away from you. You are forever my loving grim grinning ghost.

All my love,

Your Minnie, Abby

This clip has the whole sweet conversation between Christopher Robin and Pooh, from Pooh’s Grand Adventure: The Search for Christopher Robin (1977), Walt Disney Television Animation