ALS

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

ALS, Walt Disney World, Lilo and Stitch
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 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 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.
Stitch gave Ben some extra love!

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!

Happy Birthday and Thank You, Goofy!

When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.

Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie.  A couple of times, Mickey even helped me to help  Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. I think that Ben was overwhelmed and his tears were a kind of rare plea for help. For magic. It was an overwhelmingly sad and emotional meet and greet, with Ben and me in tears. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.

It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.

Thank you and Happy Birthday, Goofy! You are 90 years young, and a forever friend.

On Ben’s Birthday and Other Milestone Dates, There is Love To Infinity and Beyond

Today is Ben’s birthday. Just one more lousy milestone date in February. I had no idea how I would feel today so I had no plan.

I woke up and greeted my laptop wallpaper- a picture of Ben- with loving birthday greetings. Tinker Bell and I watched the birthday video that I made a few years ago to honor Ben’s birthday. I still miss his playing the song for me on my birthday, but I like listening to it on his. Another day of memories. At this point, I am just resigned to it. At least this morning I’m thinking of the good memories and not just about the times of ALS and illness.

I decided to go to the Metropolitan Museum of Art, where there is a Walt Disney exhibition. Ben and I loved to go to the Met. He had not spent time there until we began dating, and I enjoyed his reactions to areas and objects that I loved, as well as discovering new things with him. I am an art lover and Ben loved history, so it was fun to see things through his eyes.

I was feeling proud of myself for summoning the energy and motivation to go to the Museum on this day. In my mind, it was growth that I did not end up sitting on the sofa all day, exhausting myself wondering what to do and ultimately waiting until it was too late to do anything but feel down. It showed that I was finding ways to honor Ben and our relationship, but also living in the present. Unfortunately, I did not consider that today is President’s Day AND the beginning of a vacation week for NYC public schools. The lines were crazy. I was told it was at least a 90-minute wait for the exhibition. In the midst of my medical treatments, my health is fragile now and I did not want to compromise my safety, so I left. I am a member of the Met, so I will return, but it was a disappointment on an already sad day. I found myself pondering if it just poor planning or if it was a message that today is not the day to look ahead, even if motivated by Ben and our memories? Thoughts like these keep me on the sofa, immobile and lost.

Returning home to the cocoon of my memories is also retreating to the way I have previously coped with my grief. My go-to on days like this is to watch Ben’s favorite films, including Monsters Inc., Toy Story and Mulan. I do like these moments of communing with my memories, even if they bring tears.

Today, as I watched Monsters Inc. I was most moved by the scene where Mike gets Sully that one missing piece that allows him to open the door and reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, but my loved ones are not really there. I am greeted by a flood of bittersweet memories. I have to decide when to step back across the threshold into the world of the living. On days like today, it is a sad journey. At the same time, I am grateful for the memories.

I am still Mulan, asking myself, “Who is this girl I see, staring straight back at me?” Grief has let me discover new sides of myself and reflect on who I am and who I want to be. In my opinion, that is never a bad thing. What I always strive for is that if I ever figure it out, that I am someone who, like Mulan, would bring pride to Ben and my family. But, I’m definitely no warrior, except, as Ben would tell you, at a really good sample sale.

Happy Birthday to my Mickey. You are missed every single day and I love you “¡hasta el infinito y más allá!”

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

Finding the Pixie Dust On A Difficult Valentine’s Day

This year’s Valentine card, featuring Tinker Bell and my new craft, paper quilled Mickey and Minnie, hearts and random shapes.

I have always loved Valentine’s Day. I have hand-made Valentine cards for as long as I can remember. My great-aunts and great-uncles, and of course my parents, aunt and grandma, saved all of them. As they’ve passed on, their collections of the cards I made for them made their way back to me through relatives so I would know that they were kept and treasured. Ben had his own collection, and I look at all of the cards from time to time and on days like this. I see them as testaments to the love we all had for each other. For my older relatives, my cards were the only fun mail they received and I was the person of my generation who always reached out to them. Crafts give me a sense of peace and inspiration, so instead of stopping the tradition, I decided to continue to tap my inner child with my card-making tradition, giving them to special people in my life.

I must admit that Valentine’s Day is bittersweet. As I posted yesterday, my dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements. My dad’s birthday is tomorrow. Ben’s birthday is the following week, followed by the anniversary of the death of my grandma.  

With Ben, our Valentine’s Day celebrations were often sweet and simple. Following his ALS progressed, after I put him to bed, I would make a card and decorate the apartment. He heard me rustling around (one of the downsides of being a klutz!) and knew that I was creating something for him, and he looked forward to his Valentine’s Day surprise. It added some whimsy to his homebound life and was a loving time. I do miss those special and romantic rituals. 

The last Valentine I made for Ben, in 2015.

I reflected in yesterday’s post (click here for that post) that despite the sad dates that mark the month of February for me, and maybe because of them, I seize the opportunity to celebrate love on Valentine’s Day. Making cards for my friends is so important to me because it is a positive, creative and fun tradition in which I reach out to my treasured friends to let me know how much I value them and also remind myself of how much love there is in my life.

Last year on Valentine’s Day, my beloved aunt Eleanor died after many years with Alzheimer’s Disease. She had not been verbal or recognized me in quite a while, but I was not able to visit her due to COVID and lamented that we would not have our Valentine’s Day visit. She always held the cards and smiled as she touched the picture of my cat that always is featured on the card. Ellie and I had a special bond and even when she could not recall my name or who I was in her life, I could make her laugh and we seemed to relate to each other as we did throughout my life.

I am currently on a leave of absence from teaching due to surgery and treatments, and I miss sharing the Valentine’s Day experience with my students. I believe in sharing love and appreciation with my students. I teach them some love phrases in Spanish and bring a bevvy of stickers and glitter glue for them to make Valentine’s. They do respond with smiles, creativity and love. Being teenagers, most are concerned with romantic love, and lament the lack, or the drama, of it. They know that I lost Ben and they are always intrigued by my enthusiasm for this holiday. I see that it resonates when I say love comes in many different ways, even in my love for them. I have been delighted to receive some Valentines from them, too! I like to think the life lessons on kindness stay with them.

The holiday is definitely different now, and, honestly, not as happy, but it does give me joy to take a positive action to show my love and appreciation for special people, in my craftsy way, and to share a special tradition that keeps Ben, my parents, grandma and great-aunts and great-uncles close. It lets me summon the Disney princesses and the hope that I will one day meet a new prince.

If you are struggling on Valentine’s Day, here are some thoughts and ideas:

If you are in grief, or are a caregiver grieving the life and relationships you used to have, this is a good day to focus on the love and caring that surround you. These are times that we can feel lonely, and alone. In many cases, friendships change and there is alienation. Frankly, it can be hard to think of love. The challenge is thinking of the littlest gestures that stay in your heart. The kindness of someone on the medical team, patience shown to you, a memory that brings a smile, a smile that you brought to your caree. On days like this, when it’s easy to feel sad, I find myself hearing Walt Disney say, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” It might feel phony at first, but there are many loving moments for which to be grateful. If you’re craftsy, make a card for someone. Email a card, send an ecard. Let someone know that you appreciate them. Many of us have experienced people who want to be supportive but do not know how. Receiving correspondence from you might encourage them to reach out more regularly. Write a love note to your caree or to the person you have lost sharing loving memories. You do not have to share these letters. If you follow my blog, you will notice that some of my posts are letters to Ben. They are helpful forms of self-care. Click here for an example from the most recent anniversary of his passing.

I am grateful and feel appreciation for the many former and current caregivers I have met for sharing your stories and your hearts. Tinker Bell and I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!

Tinker Bell supervises the final touches on our Valentine’s, since she’s the star!

Never Underestimate the Power of a Hug!

Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014

Today is National Hugging Day. Seems there is a National Day for everything. This is one of my very favorite photos from Walt Disney World. The story is interesting and, I think, worth sharing.

Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, he still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. After all, I was always the one who got super excited to see my friends and he generally laughed at me. In this photo, we had just entered the room and were greeted by Mickey. This was during the brief window of time that Mickey spoke (electronics, it wasn’t good). I was so shocked to hear him and couldn’t stop laughing.

What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful.  I needed that hug. I needed to believe that Mickey could help.

I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.

I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.

Hugs were so important to us. Since the characters don’t speak, hugs were a way that they communicated. When Goofy saw Ben get emotional, he didn’t know what to do so he kept hugging Ben and then trying to make him laugh, which he did. Hugs are powerful.

This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.

I always hugged Ben, particularly when there were no words for what he was feeling, but one of the things that upset him as his ALS progressed was that he could no longer give hugs. Ben gave great hugs! He was a big, burly guy and would just envelope me. I still remember him saying that he felt terrible that he could not hug me when I struggled with my Dad being ill and I learned that my dad died. He couldn’t hug me after I returned from the funeral.

I think that COVID 19 has shown us that we cannot be dismissive of gestures like hugs. I miss them. Tinker Bell gets lots of them, though she would tell you that she doesn’t love hugs at all.

I send everyone a big virtual hug of compassion on this National Hugging Day! Let’s hope that next year is different.

#NationalHuggingDay