My dear Ben,
Today is five years. Five years. It’s been a difficult day, as it always is. I went to sleep reliving our last night together. I woke up reliving that last day. I’m still grateful that you left this earth surrounded by love and music. It still hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.
Five years. Should those memories still be so debilitating? It seems like a milestone increment of time that should come with some kind of revelation. Should. I hate those “shoulds.” I think about the quote from Disney’s 2015 live action Cinderella: “Time passed and pain turned to memory.” Does it? “Should” it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. Triggers like this date are huge setbacks. I think that the quarantine period due to the pandemic has brought back so many of the caregiving memories. Although removed from those responsibilities and worries, with every excursion outdoors I have found myself dwelling on how it would have been if you were here and there was a constant threat of COVID on top of ALS.
Five years. I don’t know where I expected to be. I try not to concern myself about what others think about it. There are times when I feel like I’ve come far and times whenI feel that I am too consumed with our experiences and still in a relationship that I must face can now only exist in the form of a spiritual connection. I recently printed out all of my blog posts from the past four years. I spent the past several days reading them- 695 pages of thoughts, memories, regrets, concerns, wishes, successes, failures, steps forward and steps back. I can see that over the past five years I have ventured more purposefully into life. I have done a lot of reflecting. I have carved out a nice life for myself. I have also given myself permission to feel however I’m feeling. I find it satisfying to find ways to support other caregivers. I am proud that I have contributed to fostering a caring community within my school and I still intend to reach more caregiver kids. I have good friends- old and new- and I do things that I love. I even wore a wet suit to get in the water with beluga whales. Yes, I actually bought and wore a bathing suit. Early in my writing I expressed a reluctance, but also a sadness, that I did not know if I could ever enjoy Walt Disney World without you. Last year, I was able to return with Monica, Andi and Snappy (Abby 2.0) and we honored you while we also created new memories. It was heartwarming and empowering. So, there has been growth. Is it enough?
I feel a sense of bittersweet pride when I take delight in the new memories. I flounder when I think about the future, especially when I consider that I am alone. Yet, I know it’s time. I even bought a new set of picture frames to capture the new memories and give them a special place beside ours. When I say it’s time, it’s not because of the five year marker. If it had happened after two years, that would have been fine. If it didn’t happen for another five years, that would have been fine, too. Walt Disney said, “First, think. Second, dream. Third, believe. And finally, dare.” Thinking and dreaming are easy for me.When I say it’s time, it’s because I’m feeling prepared to try to believe in myself enough to dare to find my way. I think that’s a good thing, even with the pain.
I am not sure where I want to go from here, which is one of the reasons that I printed out my blog. Merida says we need to look inside ourselves to see our destiny, and caregiving and grief resonate so clearly within me. I think that this five year mark is a good time to look at this period of time and my evolving perspective. It gives me great comfort to know that you remain so vibrant in my treasure trove of memories. I feel that those memories propel me to further explore and discover my destiny. The pain is not just a memory. It is a palpable reminder of how much love there was and how much those experiences are shaping my life in positive ways. You will, of course, join me in this exploration. Please help me to confidently travel the new paths in work, life and love.
Five years. I continue to miss you every day. I’m getting more accustomed to finding ways to keep you with me as I continue my own journey. I do often feel alone. Sometimes, I think I keep you close to avoid those feelings. Thank you for sending me signs that you’re with me. I know there are people who don’t believe in that, but we always did. Thank you for letting me feel supported when I step out on my own. I will always feel a sense of anger that you were cheated of so much life and we were cheated of so much time together. I hope that you can feel that I often look at life through your eyes to experience things for both of us. I feel the pain of your absence, but I do strongly feel your presence, too. You are still so deep in my heart, woven into the fabric of who I am. Our relationship is not baggage, but rather experience that offers the important reminder that love isn’t always easy but it is, as they say in Bambi, a song that never ends.
I spent a lot of today looking at our videos and photos. There were a lot of tears but also many smiles. I have told Tinker Bell about you. Interestingly, she spent a lot of time on your Monsters, Inc blanket. She’s been very attentive, too. Maybe you had a little visit with her. Each night, we look at your picture which is my screensaver, and we say goodnight to you.
I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I believe is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.
I love you,