On June 19, 2002, Lilo and Stich (Walt Disney Pictures) was released. But, today is Experiment 626 Day! I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient! In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories. I am equally grateful that I had an opportunity to create new memories with my buddy Stitch, when I returned to Walt Disney World in 2019. It was a wonderful time with Monica, Snappy and Andi, and an important milestone and lesson that I can return to this place that is such an important part of Ben’s and my story, keep him in my heart and even feel his presence, but step forward to live, love and laugh.
Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.
I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!
I love this little guy!
I hunted him down at the Animal Kingdom in 2007!
On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it because it was a long commute from our own hotel and I didn’t want to tire Ben. But, he wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World.
Each year, it is with pride, love and sadness that I write about my dad on Father’s Day. Much of what I write is the same. Still, the memories bear repeating, as they live within me and honor my dad. I’ve written in prior posts that my dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays. For this reason, other than feeling a little displaced and lonely without a plan to spend time with my dad, the holiday itself does not really bring me down. After all, I already miss him. The hardest part of holidays like this is the reminder that the people I was closest to are not here anymore (click here to see that post). I do believe that they are always with me, and watching over me, and that is a comfort. But, there are those times that I just want to pick up the phone, or feel a touch. I don’t fight the moments of sadness, but today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney visits with Ben, he beamed because he said he loved to hear me laugh and happy.
My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.
My dad and I spoke several times a day. He even called my cats! He was a very good Grampa to my first cat, Tiffany, and then, to Disney, and he spoiled them just as he spoiled our dogs. I knew that when I went out, I would come home to a message on my answering machine with him calling my cat to say that it was a grave injustice that Mommy left her alone. They even got packages of treats and toys, addressed just to them! Even six years later, I miss that. I tell Tinker Bell about her Grampa and that he loves her from heaven. With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. When my aunt, his sister, asks me what Daddy would say about the state of the world, we agree that there would have been many phone calls and there would have been a lot of yelling. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through- so I’m grateful that he’s not dealing with it, but I miss the comfort of his explanations. I did trust his judgment on world events. I think back to the days of Dan Quayle, when Daddy and I would rush to the phone to call each other as soon as we heard one of his mistakes. I even got him a subscription to the “Dan Quayle Quarterly.” Now, in light of what he and I would definitely consider damage to the country, Dan Quayle’s errors would be a welcome bit of relatively harmless comic relief!
This year of teaching remotely has brought families into my virtual classroom. Despite the struggles, I found it heartwarming and fun that many parents, grandparents, siblings and cousins listened to the lessons and chimed in with their own memories and thoughts. I think about how Daddy’s caring extended to my students. The reality for some students is that their families are not involved in their education and they certainly don’t talk about their classes. I often joked with the kids that my dad worked harder to learn Spanish than they did, watching the Spanish television stations and calling me to clarify what things meant. I let them know that he pitched in funds for art supplies that we used in our projects. When I told him about students who couldn’t afford graduation activities, he was right there to help. Although I didn’t talk much about his condition and experience, my love for my dad was obvious and they knew when my absences were due to his having a medical procedure. I was always moved when parents showed up at parent conferences asking how he was. That was my dad and it has become a part of me. I like to think that his example has stayed in the hearts of my students, too. I firmly believe that compassion and love are more important lessons than properly conjugating a verb in Spanish.
I’ve been looking through old photographs because they do bring me joy despite some tears. It’s hard to find photos of my dad and me together because he was usually the one taking the photos. He loved capturing silly and sweet moments, often with our dogs. When I look at some of photos that he took, I know exactly what he was thinking, or what joke or prank he had in mind, and that, in itself, makes me smile. Daddy had the best giggle, which was kind of funny for a USMC!
You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!
Today, I will try to remember that Daddy never wanted me to be sad. I cannot count the number of people who stopped me to tell me that I was my dad’s world. He was the consummate pessimist, except when it came to me and my potential and I was his consummate cheerleader. Since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. I can’t even imagine his frenzy over the coronavirus. I still can’t shake the thoughts of how I would have managed caring for him and for Ben if they were here.
Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!
When Ben was ill, despite fighting cancer, my dad never failed to think of how he could help Ben. I think that on a certain level, he felt connected to Ben because they were both facing death. But, the gadgets that my dad found to make help Ben with dexterity were so genuinely appreciated. I was always surprised to find that Ben called my dad to check on him and to chat, but my dad became Ben’s dad, too, and that, in itself, is a special memory. Daddy called Ben a gentle soul- I think they were both gentle souls. I wish I had a photo of the three of us.
Daddy would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am. Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.
I love you and miss you, on Father’s Day and every day!
Disney’s Hercules opened on this date in 1997. It made me think of the Herculean tasks of caregiving, grief and recreating my life. After nearly six years without Ben, I still find myself thinking I am on my way. I can go the distance. Somehow, I wonder if I will ever get where I’m going and if I will know where I belong if/when I get there.
I think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, right up until he left this world. I remain in awe of his bravery and strength.
My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and it did give me immeasurable joy and satisfaction to hear from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions about a book I described but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, Mrs. Miniver. I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!
Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but every mile was worth my while. I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”
Managing grief has been another Herculean task. The ups and downs have been become less jarring, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize and to do things I love, like going to the theater and traveling (with the exception of COVID restrictions). I find peace and inspiration during my strolls through Central Park, where I do see signs of Ben from time to time. Ben remains very present in our apartment in photographs, things of his that give me comfort, and things of ours that bring good memories.
When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years. I have blogged about my memories, and living with my present, but the future remains daunting. I am doing more writing and exploring ideas with regard to caregiving kids, trying to see beyond teaching, which, although rewarding in many ways, is very stressful and a constant reminder of my gut feeling that I was never meant to be in a school building. Then, there is the search for love. My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that, as with Hercules, I know every mile will be worth my while. I would go most anywhere to find where I belong. I’ll keep you posted…
