Caregiver

You’ve Got A Friend In Me- Friendships During Caregiving, Illness and Grief

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You’ve Got a Friend in Me
By Randy Newman

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You’ve got troubles, and I’ve got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

Last week, November 23, marked the 23rd anniversary of the release of the original Toy Story. Ben absolutely loved Buzz Lightyear and we both loved this film and its sequels. In the context of Thanksgiving and the film’s anniversary, I’ve been thinking all week about the lyrics to the song You’ve Got A Friend In Me.

The song applies to so many aspects of my life. It is almost a caregiving anthem. I was there for Ben no matter what, seeing him through the darkest days. As the song says, there might have been stronger or smarter people, but the love we had was stronger than those qualities. As Ben was more vulnerable and more dependent on me for help, I know that he worried that I would say that I could or would no longer be able to take care of him. In his heart, though, when the road looked rough ahead, Ben knew that I would never leave him and that no one would ever love or care for him the way that I did. The unique bond we shared in our romance, despite the tragic circumstances, was a supreme kind of friendship.

Thanksgiving is a difficult time because it is a painful reminder of the family I no longer have. To be more positive, I try to put my energy into reflecting on how grateful I am to have friends who have become my family. There’s good reason this song comes to mind at this time.

Friendships can help to sustain us. I consider myself fortunate to have known my best friend for more than 50 years and to have had my closest friends for much of my life. We have been there for each other through the good and bad times. Sadly, over the past several years, I feel like I needed my friends often- as my dad became more ill and as Ben’s ALS progressed, and then, of course, as I grieved their loss. My patient and devoted friends listened to me repeat the same issues without any resolutions, and despite any opinions they held, they did not give up on me or Ben. They were also there to help Ben, being my backup if he needed assistance when I was with my dad. They voiced their concern for me. They asked what they could do for us. I knew that, as the song says, “there isn’t anything I wouldn’t do” was the way my friends felt about me, and it was and is mutual. I always placed a high priority on being there for my friends, but I still was not happy being on the receiving end of the giving during this time. At the same time, it was a huge comfort to know that I could depend on my friends, and it is beyond heartwarming to see them cheering for me as I have more steadily and confidently moved forward.

Sometimes friendships last forever, sometimes they are brief but deep. Sometimes we make connections that touch our lives although they are not even actual friendships. When I was the caregiver for my dad and Ben, I experienced all of these relationships. There were the people who unexpectedly reached out with a kind word or helpful gesture. There were people whom I did not know very well who had helpful insight, were there to talk at just the right moment, or were simply genuine in their expressions of concern. There were even people I did not know well who were kind enough to keep Ben in their hearts and do the Ice Bucket Challenge or contribute to ALS causes and our fundraisers with their families in Ben’s honor. I will forever be grateful for those moments and people. It’s an important reminder of optimism and faith in humanity.

Friendships also shift over time, even during good times, and that’s natural. People move, they get involved with different activities, have families. Terminal illness and my caregiving definitely caused a shift that forced me to evaluate what I considered good friendships. Some people whom I thought were good friends proved to be terribly disappointing. These are the people who said they never called because they knew I was busy, or who did not really ask much but were extremely judgmental. They were people who wrote lots of niceties on social media but never actually reached out or demonstrated friendship.

There were also people who, when we did communicate, would tell me that they knew they weren’t being good friends, seeming to want me to excuse them. At first, I did console them and say that I knew they were thinking of us and would have been there if I’d asked. Eventually though, I felt no sense of responsibility to make them feel that they were great friends because it simply wasn’t true. I felt abandoned when I needed to feel friendship. I suppose I could have reached out and asked for help or support or just a friendly conversation to help me feel like I was connected to my life and friends beyond my caregiving world. It’s hard to do that when you’re feeling overwhelmed by life. That would have been a way to care for myself but I was not up to it. I needed people to step up to me. When they didn’t, it was hard to accept that I simply didn’t fit into the lives of some friends the way I wished or expected. In many cases, I have remained friends with these people, but I do not feel the connection that I used to feel.

Ben also struggled with friendships as his ALS progressed. There were a handful of people who were loyal to him throughout his illness. ALS is known to be an isolating disease and, indeed, a person with ALS (pALS) loses the ability to easily communicate. Ben managed to text through his computer. His speech became impaired and if it was too difficult for him to be understood, he gave up trying. The number of people who reached out to him steadily dwindled. He felt unimportant and abandoned, which was heartbreaking.

We’ve heard the expression that to have a friend you have to be a friend. Friendship is a beautiful gift to give and receive. I do have to remind myself  that everyone has their own definitions of friendship and people form friendships for a variety of reasons with many different expectations of giving and receiving friendship. Some people need their friends during difficult times and others withdraw. It’s also important to see a big picture: as I needed more than I could give while my dad and Ben were ill, my friends might have those experiences as well. We cannot always be there for each other. What we can do is communicate openly, honestly, and compassionately.

It’s not always easy to know how to be the best friend you can be. Sometimes, in the case of someone who is caregiving or who is ill, it means asking how you can be a good friend, or just being genuinely present and available to listen, validate and comfort, or to let your friend know that you are giving them the space they seem to want but that you are there for them when and if they are ready for you.

Through our actions and expressions of love and support, I believe and am so very grateful that my dear friends and I agree that
And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me.

 

Gratitude is a Superpower on Thanksgiving and Always!

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2011- The first time we went to Fantasmic!

I have to admit that even thinking about Thanksgiving gives me anxiety. But here it is. Thanksgiving is a very difficult holiday for me because it reinforces that I’ve lost the family to which I was so close. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. At these more challenging times, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

Of course, I always take comfort in Disney, so try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me. I can’t shake the hovering sadness that I don’t have my family. Much of the family that I do have is religious and judgmental, and I don’t feel comfortable with them. Ben’s daughters are not in touch with me, so that is another lost connection.

However, I am grateful to have amazing friends, and I will celebrate with them today. I am so fortunate to be included in the families of my friends and my friends are my family. And, I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy and opportunities to reflect and sort through my feelings.

Every year, I talk to my students about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. I do validate the need to have a pity party from time to time, but said that once you begin to think of those little things for which you’re thankful, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself when Ben and my dad were ill. Some of them have sad lives, especially at such young ages, so I like to see them respond to the idea of feeling grateful to receive a text that makes them smile, or that someone in class made them laugh, intentionally or not! It was nice to watch their faces light up as they raised their hands to share things they are grateful for- in Spanish, too! (well, I am a Spanish teacher!) Family is a sore spot for some of them, so they are happy that our vocabulary list includes music, candy, videogames, cell phones and other assorted things that they love.

Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

  •  At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.
  • I am grateful for my cat, Disney. She has been there for me in good and bad times. When Ben was in the hospital, and I knew that he would never come home again, it was a priceless comfort to return home to her. Disney always loves to be hugged and I know that she was attuned to my sadness. I am now her caregiver, as she has many medical issues, but she has brought so much to my life and it is my privilege to take care of her. I’m grateful for my love of animals, as they are often more intuitive, honest and more humane than humans. And, they completely delight me!

Brave Disney during her hospital stay.

  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.
  • I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words.
  • I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
  • I’m certainly not grateful to have had a romance cut short by ALS and to have to try to date and look for love again. The online experience is not really working for me, but I’m grateful to have met some nice people who give me hope that someone may very well be out there for me! And, it’s nice to feel the excitement of a little crush or at least the possibility of romance from time to time!
  • I am grateful to be teaching in a wonderful public high school. Not only is it a healthier environment than my prior school, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. Those memories certainly follow me, but it’s good to see that I can move beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. My school plays music instead of ringing bells to signal the beginning and end of a class period, and my kids always love when I smile at the playing of “Twist and Shout,” sharing that it is the first song that Ben and I danced to- well, they’re teenagers- they love romantic stories! My stories sometimes help them share their stories, and we build a strong sense of community and compassion.
  • As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and last summer I earned my certificate as a caregiving consultant. I am grateful to have met some terrific people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases.
  • I’m grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

Wishing well at Walt Disney World
July 2014

At this time of year in particular, I think about Pollyana, her wonderful world view and the “Glad Game” in the 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter. (click to read my original post about that). This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every bad situation around and think about something you’re glad about regarding that situation. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. That said, I don’t like when people tell me that things happen for a reason with regard to my Dad and Ben and their experiences- there is no reason for those kinds of illnesses. The lessons could have been learned without that kind of suffering and loss.

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions  For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. Try the “Glad Game.” And watch Pollyana. Please get back to me and post your comments in the space below.

Happy Thanksgiving.

With all good wishes,

Abby

 

 

 

Happy 90th Birthday, Mickey Mouse!

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Dear Mickey,

Happy 90th Birthday!

You may turn 90 today, but you are the eternal child who brings out the inner child in all of us. I know it’s Minnie’s birthday, too, and I also wish her a Happy Birthday! Walt Disney said to remember that it all started with a mouse, and what a special mouse you are!

In the pre-ALS days, 2006

I miss my mom and Ben today. They would surely have joined in the festivities. I must admit that I feel pretty lonely. But, I’m celebrating the long history that we have and remembering wonderful, whimsical times with and about you.

Though you’re a few years older than my mom would have been, she loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse and Epcot Figment in her arms. My mom was the consummate child at heart, and I get that from her!

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

When I first started dating Ben, he was not as obsessed with Disney as I was. That changed quickly, and our first dates often began with a stroll through the Disney Store that was near the office where we worked and met. We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I’ve kept those.

We always treasured our visits to Walt Disney World, but after Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World, and we were so fortunate to be able to go four more times. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Epcot, Walt Disney World, Halloween 2012

I admit that I was the one who had to greet all of my Disney friends. But, with you it was different. Ben always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional and tear-filled. With an ALS diagnosis, we wanted and needed to feel the pixie dust, and more than once I asked you for some magic. I do remember that a sensitive cast member saw that Ben’s meeting with you was deeper than just seeing a favorite Disney friend. As we left, he quietly handed me a “ruby” that he told us was found by one of Snow White’s dwarfs in the mines, and he said he hoped it made our wishes come true. I still have it. It may not have fulfilled the wish that ALS would be cured, but I still believe that it helped us to create many wonderful memories. I thank you for that.

Mickey was always there to help Ben.

For as long as he could, Ben would insist on walking to stand in his pictures with you. It was truly touching when you spotted Ben in the electric wheelchair, helped him up and escorted him to the area where photos would be taken. He rode up to you when he lost the strength in his legs. It was then that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Deciding that he could no longer walk up to you was a sign that ALS was winning the battle. But, Ben also had an incredible attitude, never lost his smile and laughter, and he remained determined to engage in life, especially with you at Walt Disney World.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Mickey’s Not So Scary Halloween Party 2012

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2012- A subtle but significant change: Ben stayed in the scooter when he met Mickey Mouse.

You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Since he has been gone, you have continued to entertain, console and inspire me. I have to admit that this very auspicious occasion has made me a little sad because my mom and Ben aren’t here to help me celebrate, but my memories of our times with you keep me smiling, even though there are also tears.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

Happy Birthday, Mickey. May you always continue to be the spark of hope, inspiration and happiness for children of all ages.

I will always love and thank you,

Abby

 

Veteran’s Day and What My Dad and Walt Disney Had In Common

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Today is Veteran’s Day, and yesterday was the 243rd birthday of the United States Marine Corps. I’ve written about how the USMC was so important to my dad (click here for more). He was a patriot through and through. My dad was not a huge Disney fan, though he had a healthy respect for Mickey Mouse (he really had no choice in our house!) Truth be told, he and Walt Disney had something important in common: patriotism.

My dad was in the USMC during the Korean War but he had a tremendous fascination with World War II, during which he was a child. He and I were so close and spent a lot of time together, but when he was ill, I cooked and ran errands for him every weekend, and Ben and I found lots of documentaries about WWII for him to watch that Daddy liked to watch with me. I still miss the days of going to bookstores and finding the new World War II titles, calling him and reading the jacket descriptions to see if they piqued his interest and buying the ones that intrigued him, despite his protests of his (not really)  impending death and that he “won’t need them where I’m going.” Daddy and Ben actually enjoyed discussing the war when Ben was well and we visited him together. Sometimes, Ben would ask me a history question and we would call Daddy and get a very detailed history lesson by phone. My dad loved that Ben knew all the important USMC and war event anniversary dates. Ben and Daddy bonded over their shared love of history, but they felt particularly close when they were both ill with terminal illnesses. The other thing they had in common was needing me as their caregiver.

Ben and I found this book at a used/rare bookstore in Nyack, NY. Without even knowing that, the rabbi at the VA hospice told me that my dad treasured and was so proud of it, which touched my heart.

In his last years, my dad was concerned about the young men serving in the military. He took such interest in the guys in our neighborhood who were returning after various deployments and were struggling to adjust to civilian life. I met some of these young men when I visited my dad and was amazed at how well my dad knew their stories. He genuinely cared about these “kids,” as he called them. He felt they were the disenfranchised, abandoned by the government and that the general public did not relate to them. Daddy found reasons to tip the kids, give them things he knew they needed, and probably most importantly, listen to them.

Ultimately, Daddy ended up at the VA hospital out in Northport, Long Island, in the palliative care/hospice unit. We were both grateful for the amazing care he received. It certainly is not the case at all VA Hospitals around the country. I was grateful to have had the experience of meeting many veterans in that palliative care unit, hearing their stories and feeling their dedication to this country. It fueled my own pride in this country and my devotion to the men and women who have fought and continue to fight to keep us safe. I proudly display his beloved model F7- the plane he flew and one of his USMC caps, and I keep his dress blues jacket safe and sound in my closet.

Not many F7 planes were made during the Korean War- he studied aviation and this was the plane he trained on- so it was hard for my dad to find a model of it and this was treasured.

My dad’s dress blues jacket. I loved to try it on when I was young. He didn’t keep his cap, but this was dear to him and it carries loving memories for me.

It pains me to think of how distraught my dad would be over what’s happening in the country now. Growing up, I dismissed his warnings that history was important because history repeats itself. I think about that so often now as I read the news. It scares me, and I fluctuate between wishing so much that I could talk to him about it and being relieved that he is not eating his heart out.

Regardless of our individual opinions on America, today is a day to honor the veterans who have served this country. Their patriotism runs deep beyond politics that often puts their lives on the line. Daddy always wore a USMC cap and he loved when people thanked him for his service. When he saw other veterans with caps, he thanked them for their service. They would sometimes chat and reminisce. I think they liked to revisit the times when they felt strong and active.

I once gave my dad a 2-disc DVD set called Walt Disney Treasures: On the Front Lines, which highlights Disney’s contribution to American military participation in World War II. My dad was amused by my ability to find this connection between my love for Disney and his love for WW2!  In 2014, shortly after my dad passed away, Disney During World War II: How the Walt Disney Studio Contributed to Victory in the War,  a fascinating coffee table book, was published. I bought the book because it reminded me of my dad and how much we embraced each other’s lives. John Baxter, the author, pointed out that during the war, Walt Disney’s studio primarily did military contract work- morale-boosting war dramas, troop entertainment and training films for the military and, unlike big companies like US Steel and the Ford Motor Company, Walt Disney insisted that the studio did not profit from this work. Walt Disney said, “Actually, if you could see close in my eyes, the American flag is waving in both of them and up my spine is growing this red, white and blue stripe.” I think my dad could relate to that comment.

I had to have Stitch as a Marine! The USMC would never be the same!

Today, and always, I honor my dad and all veterans on this day, with an extra special shout out to the USMC! Semper Fi! Thank you for your service! And, because he found his way to use his unique and brilliant talents to show his patriotism, thank you, Walt Disney!

Daddy at Mitchel Field and the Cradle of Aviation Museum out on Long Island. He loved to go there.

Milestones- Preferring the Very Merry Un-Birthday

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Walt Disney World, Grief, ALS

At the Crystal Palace

(I wrote this late last night) Today, October 27, is my birthday. My fourth birthday without Ben. I still seem to measure time that way. It’s still emotional to think of celebrating events without him. I can’t seem to feel happy. I want to indulge in that childish delight about a birthday, but I can’t shake the sadness. I always struggle on milestone events with not having Ben or my mom, dad and grandma- the people I was closest to- with me. Yet, it’s not just that, or guilt about continuing to navigate life when they aren’t here and conveying in any way that they are even a little bit forgotten. I don’t feel comfortable celebrating myself and, although I am so grateful for good friends and birthday wishes, I am much more comfortable celebrating other people. Maybe that says something about my self-esteem as much as it does about grief, which is definitely something I need to think about.

I made plans with a good friend to go to the theater, which is always one of my favorite things to do, and I preferred to think about a show rather than my birthday. It was a nasty day with a nor’easter, which seemed fitting for my mood. We saw Oklahoma! At St. Anne’s Warehouse in Brooklyn, and although we were looking forward to exploring DUMBO, a neighborhood I had never visited, the storm limited our plan. I knew to expect that the show was a dark interpretation, which was sort of unusual for this musical, but also appropriate for my mood. Throughout the day, I got sweet texts and calls and posts on Facebook, which touched my heart. I really wanted to be happy, but trying to act happy actually made me sadder. Ironically, if it had not been my birthday, it would have been a perfectly great day. Maybe the March Hare was onto something when he talked about a very merry un-birthday. I find joy in so many things and from so many people. Those are my “un-birthday” gifts.

I think about the wonderful birthdays I had with Ben. I loved that he always wanted me to feel special on my birthday, and he often planned little surprises for me. That was more about the romance than about the birthday. Now, I feel awkward making or being a part of the planning of my birthday plans. For so long, I defined myself by the way I cared for my dad and Ben. I planned surprises for Ben and took opportunities to celebrate him and us whenever I could find them. I need to learn to feel the confidence and comfort in taking care of and acknowledging myself.

Once again, after a good cry, I comforted myself with the memories of birthdays with Ben. I’ve shared these in prior posts, but please indulge my sharing some of my favorite Walt Disney World birthday memories with Ben:

The time I asked Mickey how old I looked and he held his hand up and I asked if he thought I looked 5. He shook his head and held his hand up again and I asked if he meant 50. This went on for a while until he held up one finger at a time and I realized that he only had 4 fingers. He looked up at the ceiling and held his hand to his forehead and when I looked over at Ben, he and the PhotoPass photographer were laughing hysterically. Ben couldn’t believe that I didn’t know my Disney buddies had 4 fingers and he said the photographer was laughing so hard that she couldn’t take a picture. From that point on, Ben and I only “high four-ed” each other.

Mickey has Four Fingers!

The birthday holiday we took there when Ben proposed to me. The actual proposal was on Halloween because he knew I would love that. I did.

Mickey congratulated us on our engagement!

Birthday hugs from Pooh, Eeyore, Tigger and Piglet at the Crystal Palace, because I had to have birthday lunch with my friends from the 100 Acre Woods. I was as gleeful as a 5-year-old when the waiters sang “Happy Birthday” to me. Ben surprised me with a cake once and Pooh kissed my hand. I’ve kept all the confetti and the birthday cards.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

The little girl at the Akershus Restaurant whom I noticed was intently watching Ben and me as we struggled a bit to get him into a chair and then as I cut his food and helped him to eat. When she saw the waiter bring me a little cake with a candle and sing happy birthday to me, she came over and wished me a happy birthday and gave me a hug. Kids have such intuition, and her mom and I both had tears in our eyes.

Dancing with Stitch and Goofy at the Halloween party while Ben sat in his scooter, laughed at me (with love) and videotaped it. As if anyone who knows me would be shocked!!

Getting extra candy when we went trick-or-treating at Mickey’s Halloween Party because I announced that it was my birthday, probably more excitedly than most of the little kids. Between Ben in the electric wheelchair and my birthday, we did very well collecting candy!

Having so much fun tasting the foods at the various pavilions during the Food & Wine Festival. Even though he needed help with food, and he couldn’t eat everything he wanted, Ben loved to be at Epcot and he didn’t let himself lament what he couldn’t do or eat.  His attitude was incredible.

And then there were the magical birthday surprises that were not spent at Walt Disney World. There was a time that my birthday fell on parent teacher conference night. Ben and I had decided that we would celebrate over the weekend instead and it was no big deal. He picked me up at school, as he always did after evening events, and when we got to my apartment, I was delightfully surprised to see that he had decorated with balloons, flowers, a cake and some of my Disney toys all around the decorations. He had done all of this after work and before meeting me. That was Ben-always romantic.

I am grateful to always have those very sweet memories, and so many more. I grieve for the birthdays I won’t have with Ben, and also for the birthdays he won’t have. But, I’ve often felt his presence and I know that he is with me, as are my mom, dad and grandma. People say that Ben would want me to be happy and to celebrate. I’m sure that’s true, but it still doesn’t feel quite right. Maybe it will feel better on a very merry un-birthday!

At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

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