It’s Stitch – Experiment 626 – Day! Memories of Stitch and ALS

The very first time we met Stitch, October 2006!

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.

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 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 while planning this visit because it was a long commute from our own hotel and I didn’t want to tire Ben. Even in an electric wheelchair, transferring and navigating was exhausting to him. But, Ben 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. Also, because it meant so much to Ben to do this for me, at a time when I was doing so much for him. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World and the way that Stitch and our many Disney friends helped us to transcend the realities of ALS.

July 2014, Breakfast at the Polynesian Hotel.

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.

Making new memories at Walt Disney World 2019

Happy Stitch Day!

June 19, 2022

On Father’s Day, Looking Back to Look Ahead

abby_admin Grief, Uncategorized 0 Comments

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 does not really bring me down. After all, I already miss him. I think that the hardest part of holidays like this is that I am reminded that I don’t really have traditional family anymore because the family 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. The cardinals in Central Park remind me of that, too, which is one of the reasons I have become so attached to being there. Still, 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.

*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.*

I have shared many memories of my dad, from his time in the Marine Corps to his love of animals to his sense of humor and wonderful laugh. More and more, I see how he has influenced who I am, in the good and not so good ways. People might think that I spoil Tinker Bell, as I did Disney and Tiffany, but I come from a family of pet spoilers! He never minded that our dogs loved to chase the squirrels, though he would shake his head as they barked at the same tree while he knew the squirrel had probably climbed to the next village! We loved animals, and I’m sure that he would have been feeding the squirrels with me, thrilled at the little relationships I have developed with my Central Park buddies.

With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through and his mother was from Ukraine (I believe that my grandfather was from Russia, but the borders and countries changed so often then that it’s hard to say). As much as I miss his presence, I am actually grateful that he is not living through what seems to me to be the downfall of this country, but I miss the comfort of his explanations. Daddy was a yeller, and I know that he would be calling me to scream about every outrageous attempt to destroy our democracy. I did trust his judgment on world events because time and time again events did play out according to his predictions. 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!

Daddy’s kind generosity is something that I have tried to share with my students and what has surfaced so beautifully in members of my school club. The students are kind and I am touched when they say that my compassion inspires them. Really, those qualities were gifts from my parents. When I see the many students who do not have fathers to celebrate, for a variety of reasons, I know exactly how fortunate I have been in my life. Sometimes, it has been those very students who most value hearing about my dad and hearing me say things he taught me, such as “you get more with honey than with vinegar.” When he was alive, he often contributed to supplies for the arts projects I did with the kids. While I always enjoyed bringing new experiences to the kids, an added and especially touching aspect of this involvement of my dad was that for many kids, we were providing a feeling of being cared for, a real idea of family.

*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 also remember that Daddy never wanted me to be sad. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney World visits with Ben, he beamed because he said he loved to hear me laugh and happy. 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. At a time when I am pursuing writing and other ideas, I must to constantly summon the confidence my dad had in me that I have never had in myself.

*Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!*

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 and what I aim to accomplish. 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!