For my Mom

We were always Mickey Mouse fans!

Today, January 13, 2018, marks 26 years since my mom, Sandra, or Sandy, left this earth. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me.

This is never a great day. To the people who say that I should not be so affected after 26 years, I say that we all handle things differently. Dates are important to me. I choose to take these anniversary dates to remember my loved ones. I don’t anticipate how I will feel, I don’t punish myself, I don’t feel obligated to act any particular way. But, every year on this day, I do tend to wake up with the vivid memory of how my dad called me and said he thought my mom had died and the ambulance was on the way. His follow-up call confirmed it.

This year, again, I did wake up to those memories of the phone calls from my dad telling me that my mom died. There were tears. However, today I chose to celebrate a special memory. My mom met me in London during a summer that I spent studying there. We went to the theater every night. One of the shows we saw was Stephen Sondheim’s “Follies.” We loved it. I saw that there was a screening today of National Theater Live’s performance of this show. It seemed like a perfect way to remember my mom.

The thoughts of losing and missing my mom did hover over the day. It didn’t help that I found this production particularly dark and depressing, even for Sondheim. But, I also thought of fun memories of our times together, in London and in general.  Part of me can’t help but lament the time that we lost and that my mom never met Ben. But, I never lose sight of how lucky I was to have my mom. She was a truly selfless, beautiful and very adorable person and mom. In this clip, Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her.  Of course, my love of Mickey Mouse and all things Disney always make me think of her, but I hope that in some small way I have followed her example. I do know that she is always with me.

Copyright © Disney’s Cinderella, 2015

In my mom’s memory, I’d like to share some details about my mom and some of the important ways in which she influenced me, even in my caregiving days. This is a reprint of the post I published last year on this day:

My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie.  There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.

My mom and I were very close, or, as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We had so much fun. Frankly, I could not imagine living after she died. I loved her and she loved me, unconditionally.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times.  She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles.  I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. For a change of pace, I often brought home treats from Zabars or other NYC places. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. As in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely baffled by our amusement.

I proudly say like mother, like daughter!

I am not ashamed to say that I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and he would plan something Disney-related, like our date to “Beauty and the Beast” (click here for that post).

I enjoyed the movie “Brave” and feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But the scene in this excerpt made me cry because it says it all. Even after 26 years, I just want her back. I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I love you, Mommy.

Heartwarming Thoughts When I’m Feeling “Frozen”

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“Love is putting someone else’s needs before yours.”- Olaf, Frozen


How could I not think about Frozen on a day like today? It’s a wonderful film with romance, royalty, family strife, tested  loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! I’ve written before about what Olaf knew about love and melting (click here to read that post), but a day like today once again brings Olaf’s lessons to mind. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

On this freezing cold day in New York City, amidst several freezing cold days here, I could not help but reflect on days spent trying to help Ben to keep warm.  As I am writing this, I am sitting in Ben’s huge old sweat pants from Walt Disney World, along with his Mickey Mouse thermal shirt and Walt Disney World Christmas sweater. My apartment is unusually chilly- normally it feels like a sauna, so I’m happier like this. And,I like to wear Ben’s clothes. They feel cozy and like he is wrapping himself around me, and that warms my heart. Unfortunately, it was not easy to keep Ben warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Our apartment is very drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes.  We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

"Some people are worth melting for," Olaf, Frozen,ALS

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to  change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver.

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Photo collage towel.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also  gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.


A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

Today, wearing Ben’s clothes and knowing how miserable he would be in the chill, I am feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. I miss him. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. It’s taken me all this time to rebuild the snowlady that I am. I realize that I did find great satisfaction in being able to help Ben and I take pride in the love we shared and the trust he had in me. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

On Disney’s “Coco” and The Power of Our Memories

The lyrics from the song “Remember Me” were very emotional.

Remember Me
Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade

Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart

Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me

Today I went to see the new Disney movie, Coco, which opened on Wednesday for Thanksgiving weekend. It highlights Day of the Dead, which is a favorite unit of my Spanish language classes, who are often surprised to learn that it is not just “Mexican Halloween.” We make calaveras, the decorative skulls, and we talk about the concept of how the spirits of loved ones who have passed away are believed to come back to visit their families on that holiday. Their spirits live on as long as they are remembered by the living who loved them. I always tell my students that although I don’t really celebrate Day of the Dead, I am moved by the idea that the spirits of my parents and Ben would come back to me every year, but that I often feel that they are watching over me.

July 2014.
Trying on sombreros at the Mexican pavilion never got old with us!

2006, before Ben’s ALS diagnosis

I have always looked forward to the new Disney and Pixar films. I was definitely intrigued by this movie because of the theme. When Ben and I went to Walt Disney World, I did love the Mexico pavilion at Epcot, where the artisans could be seen making beautiful Day of the Dead crafts and spirit animals. As I took my seat in the theater, I thought about how one of Ben’s and my favorite traditions was going to the Thanksgiving Disney movie release on opening day, or opening weekend. As his ALS progressed, that became more difficult, until it became impossible. Today, I missed him terribly and felt very lonely and alone. Some things- particularly Disney things- will never be the same without Ben.

Coco was absolutely beautiful, but very emotional, given my own losses. For one thing, the character Coco is young Miguel’s great-grandma, who is delighted by her great-grandson, although her memory of him and of everyone, is fading. But, Coco is loved and respected, cared for by the whole family. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way.  But, it was also poignant, since it echoes my own experience with my great-aunt, with whom I was so close, but who now seems to know that I am familiar, but does not know who I am. Since she does smile and get animated when I visit her, I comfort myself with the belief that memories of me are somewhere in her mind. I cannot have the same relationship with her, but I continue to visit her and take comfort in making her laugh and smile without dwelling on that she does not know my name, or that I am her niece, the daughter of her sister, whom she also does not remember.

Also integral to the plot is the profound love of and connection to music that Miguel feels to his core. Ben would have strongly related to that. Playing music and recalling lyrics that resonated with him were key to who Ben was. I took comfort in knowing that Ben would have enjoyed Coco‘s emphasis on the vitality of music.

Since my birthday and Halloween, I’ve been struggling with missing Ben so much. This was our favorite time of year and there are constant reminders of him that make me feel very alone.  Although it unnerved me and had me in tears at various points, Coco was a powerful, and, actually, a positive reminder that Ben, my mom and dad, my grandma and all of the other people I’ve loved so deeply but lost, are always with me in my heart. I was fortunate to be able to tell my dad, my grandma and Ben that I would never forget or stop loving them. Remembering them keeps them close to me always and, very significantly, it keeps their spirits alive.  Sometimes that’s not enough, like today, when I wanted to be sitting next to Ben and holding his hand, knowing that as soon as he would have seen Coco he would have handed me a tissue and I would have started laughing through my tears because he knew exactly what tugged at my heartstrings.

In typical Disney fashion, it is a movie that can be enjoyed by children of all ages. It is vibrant and colorful and fun, yet it also carries important messages for all of us about life, aging, love and loss. Ben would have loved, as I did, that there was even some Spanish language in it!

Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!

Memories, Perspective and Disney Halloween Magic

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Winnie the Pooh

2012- Mickey’s Not So Scary Halloween Party. Ben took center stage in the scooter!

My third Halloween without Ben. Though it is not traditionally a romantic holiday, for me it is, because it is the day that Ben proposed to me at Walt Disney World. I still have not been able to decorate with our Disney Halloween decorations. As I watched the little kids going to school in their costumes, I remembered how much Ben and I loved to see the cute children at Walt Disney World. I know that if he was still here, that I would have returned home to find him watching our Walt Disney World Halloween videos, bopping his head to the music and saying “Boo to You!” as they say in the parade. We would have looked at the photos and videos together and laughed at the memories while we fantasized about a new visit. Even when the ALS was progressing, Ben constantly went on the Walt Disney World web site to plan fantasy holidays. Frankly, I think it was healthy and helpful to him to stay hopeful and engaged in life. It’s hitting me hard that although I am so grateful to have the wonderful memories, I am saddened, and feeling a little lost, that I can no longer look forward to Halloween Disney adventures with Ben. That’s a tough part of grief. As I feel like the sharp pangs lessen a bit, the day to day realities, and thoughts of an unknown future, unexpectedly set me back.

One of my favorite memories, though bittersweet. After his ALS diagnosis, Ben was reluctant to meet Buzz, because he said Buzz was a super hero and he was weak. When he did decide to greet him, Buzz made such a fuss about Ben’s Buzz shirt (his Halloween costume) and Ben loved it. It gives me comfort and joy to remember Ben’s delight.

Every day my commuting routine is to listen to a special play list of special “Ben” songs. This morning, after those songs, I listened to the Walt Disney World “Hallowishes” parade music- Ben loved it even more than I did. The music did not comfort me. Although I love to picture Ben’s face watching that parade and saying “Boo to You!” I still grapple with the fact that we will never again enjoy those moments together. I wonder if I will ever want or be able to see it again. And maybe it’s okay if I never do. Maybe those were special moments that were just ours. On the other hand, maybe one day I will want to return to Mickey’s Not So Scary Halloween. That will be okay, too, because Ben will always be in my heart. He will always be present, just in a different way. Unfortunately, on a day like Halloween, it is not quite enough. I need some pixie dust or some bibbidi bobbidi boo!

This year, I baked Halloween cookies. Baking and decorating cookies is almost meditative for me.I call it my therapy. It also keeps my grandma close, since she taught me my great-grandma’s recipe, and it keeps Ben close, because he is the biggest part of any Halloween tradition and he loved when I baked cookies, teasing me about my elaborate processes. On the ghosty-ghosts (what we always called ghosts) I wrote “Boo to You!” because I know Ben would have loved that, so it gave him a sweet, special presence in the holiday that is uniquely ours.  I need that.

Halloween cookies honor Ben and involve him in the holiday.

Now, I feel like a Halloween observer rather than a participant. Maybe it won’t always feel that way, but I do feel terribly lonely, and out of place. When it comes to Halloween, I’m only at home in the memories, so I will delve into those this evening as I look at our photos and videos.

As I think about the holiday this year, and reflect on my Halloweens with Ben, I realize that my post from last year still rings as true this year, and give me a positive perspective, so here are my words and memories of our most magical Halloween ever, at Walt Disney World- IN JULY!

Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!

Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!

Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party.  Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!

There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.

Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone.  Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport.  I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport.  We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!

Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived!  We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?

Ben even had fun on the Magic Express wheelchair lift!

Ben even had fun on the Magic Express wheelchair lift!

This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.

Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift  packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint!  When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!

Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.

Ben was excited just to see the banner! He had no idea what awaited him inside!

Ben was excited just to see the banner! He had no idea what awaited him inside!

Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!

Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!

Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!

Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!

The candelabra in our haunted hotel room!

The candelabra in our haunted hotel room!

Our hotel room was very fun!

Our hotel room was very fun!

I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do.  We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children!  There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.

Walt Disney World, Pirates,Fireworks,ALS,Halloween

At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.

Pirates, Walt Disney World,ALS

Ben loving the Pirates & Pals Fireworks Cruise.

Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.

Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.

Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.

The Dapper Dans were very cool! Ben always loved them.

The Dapper Dans were very cool! Ben always loved them.

We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.

Buzz was one of Ben's heroes, but he loved Woody and friends, too!

Buzz was one of Ben’s heroes, but he loved Woody and friends, too!

bengoofy abbyjoy

We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot.  Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July!  And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.

At the Walt Disney World Wishing Well at Cinderella's Castle

At the Walt Disney World Wishing Well at Cinderella’s Castle

Happy Not-So-Scary Halloween!

The Things That Matter

There are so many things that conjure my loved ones and I hold onto those with much love and sentiment.  There is the Les Miserables sweatshirt my mom looked so cute in, along with her Paddington Bears and toy cars. I feel especially connected to my grandma when I use the rolling pins and cookie cutters that I used with her from the time I was a little girl. I hold dear the movie history book that my dad kept and updated with the death dates for the actors as they occurred. He was never interested in celebrities, so this always struck me as so odd but as endearingly funny and quirky as my dad. I love to look at his USMC cap and model of the F7 airplane he flew during the Korean War, as well as some of his books, including the book of dog breeds that we used to study when I was a girl. In my living room stands the curio cabinet that my great-uncle Davis made and my Tanta Rosie gave to me because I’d admired it since I was a young girl. Those are just some of the love-filled mementos I have of the past.

If you’ve been reading this blog, you also know that Ben and I loved to look at photos to revisit our days in Walt Disney World. I found web sites on which I could upload favorite photos and make a quilt, shower curtain and towel, so that he could always be surrounded by his favorite pictures and memories.  Now, those wonderful, magical times surround me.

Ben also had a huge and ever-growing collection of t-shirts, many of which I brought for him as little surprises. I could not part with them. I couldn’t keep that many t-shirts and wear them. I had them made into quilts for Ben’s daughter and for me. When I set mine out on the bed, it was emotional to think of what the t-shirts represented- the many Mickey’s Not-So-Scary Halloween Parties, places we visited, events we attended, and things he loved, like the Beatles. Now, it is a special feeling to wrap myself in those memories. For a while after he was gone, I continued to order t-shirts that I knew he would have loved. I’ve tried to curtail that, because without him here, they don’t bring the same joy, and I would soon need to make a new quilt!


A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

The things that bring an unexpected sentimentality are the things that become most unnerving. Recently, it was Ben’s table, which was also his desk. He brought it with him when he moved into my apartment. I never liked it, and I tried to persuade him to let us get a new one. It was a somewhat beaten up, not terribly steady, unattractive folding table. He knew it was always on the verge of collapsing, but, it was comfortable for him and since he dealt so graciously with all of my dolls, how could I really argue?


This is Ben’s table waiting to be filled with cookie batter and lots of supplies!

Several months after he passed, I began to fix and redecorate the apartment. It felt too soon, but my tiny NYC apartment held many physical and emotional scars of ALS. I knew that it was a positive thing to do, but it also came with the guilt that making the changes, albeit necessary, might even slightly imply that I was happy he was not here and I could change things. I also wished that he could be here to enjoy it. I painted, recarpeted and got some new furniture. I also put up many pictures of Ben, continued to display his things and even framed one of his Beatles albums. He was a part of each decorating decision that I made and he remains very present here.

I thought it would be good to get a new table. I found a nice wood dining table that could be extended and I liked that idea because my intention was to start inviting people over. That was something we did not do when Ben was ill because he was self-conscious about having people see him and because the apartment was, frankly, a very cluttered disaster.

Given how much I disliked the table, I thought it would be easy to replace it. But, like the computer that sat on that table, it was like a lifeline to Ben. He sat at the table almost every day. I brought him to the table in the morning before I left for work, and brought him back to bed from the table each night. His little collection of Disney toys was on that table. He played around on the computer all day at that table. I fed him his meals at that table. I set his shaving things on that table as he taught me how to shave him (I can’t say I ever mastered it very well but Ben said I did pretty well). His birthday cakes and parties took place around that table. He looked at our Christmas tree from that table, and as I explained in a prior post, I placed his favorite ornaments on our tree so that he could see them from his chair at his table. Sometimes, after I put him to bed, I would decorate the table or place surprises for him that he would spot when he sat at the table. For example, one Halloween, I got him a Disney countdown calendar figurine and every morning, when he settled in at the table, he would see that I had moved the day closer to Halloween. The night before Halloween I put Halloween garlands and fake cobwebs all over his desk area. I also waited for him to go to bed to sit at the table and make my crafts, including making elaborate cards and gifts for him.  He knew there would be surprises and he loved to discover them.


Ben’s birthday, 2013, seated at his table. He loved peanut butter M&Ms but shortly after that photo was taken, he had to stop eating them.


Birthday cake, 2013, on his table.

There was a lot of history in that ugly table! I simply could not get rid of it. I decided to keep it, and to use it when I baked cookies and humentashen. I knew Ben would approve of that, because he loved when I baked and he even helped with the humentashen until ALS took the use of his hands. I folded the table and kept it behind my media cabinet. I placed his computer right on my new table and I continue to use it to play his music. I could never part with his computer. This Christmas, I put his fiber optic Disney tree in the same corner of the new table that he liked it to be on his table.


Holiday display on the new table, with Ben’s little Disney fiber optic tree in the same position that it had on his table.

On Christmas Eve, I took out Ben’s table to do my baking. Baking Christmas cookies gives me a lot of peace and I looked forward to doing this. As I started to set up the table, one of the legs broke off. I was devastated. In a panic, I got out my drill and tried to fix it. I took out my heavy duty glues, too. Nothing worked. I managed to secure the leg so that I could use the table anyway and just hoped that it would not collapse. I asked Ben’s friend to come over and look at the table. He did not seem too hopeful that it could be fixed but he could tell that I was heartbroken and said he could try to drill new holes. I was able to complete all of my baking and decorating, which was quite a relief. Ben would be delighted with these finished products.


The last batch of Santa cookies made and decorated on Ben’s table.


Chanukah cookies made on Ben’s table.


Mickey Mouse snowmen cookies. Also, the last ones made on Ben’s table.


The final assortment of cookies! My grandma and Ben would be proud!

On Wednesday, as I went to fold the table, the opposite leg broke off. I was utterly crushed. I realized that there was no way that the table could be repaired. Ben would not have been surprised. He knew the table was not in good shape but I think that, especially as the ALS progressed, he knew what was comfortable and manageable for him. I cried as I kept some of the nails and hardware and took the table outside to the curb. This eyesore of a table that I’d wanted to replace was the hardest thing to let go.

In caregiving and in grief, we are reminded to focus on memories that keep us connected to our loved ones and let us remember them as they were and as we were together. I’ve written about the wonderful memories that comfort me in the difficult times and memories of the ugliness of ALS. I am eternally grateful for the times that I could make my dad and Ben smile, or make their lives a little easier and more comfortable. Those moments are priceless reminders of the depth of the love we shared. The heirlooms and treasured objects also hold memories and affection. Then, there are the surprising things-the “stuff”- like Ben’s table, that touch my heart with the stories they tell. In love and loss, and caregiving and grief, all of these things matter.