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

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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.

A Birthday Tribute to My Dad and Cinderella- Life Lessons in Love

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Dulcie was always a part of our birthday celebrations!

Today, February 15, would be my dad’s 92nd birthday. My dad never wanted to make a fuss over his birthday, but I always did. He deserved it. My dad taught me so much about life, integrity, generosity and loyalty, as well as the importance of a sense of humor and of being able to laugh at yourself. I strive to make him proud because I know he’s watching over me. It remains surreal to celebrate his birthday just two days after marking the anniversary of his passing and remembering that eight years ago I spent this day knowing that his funeral would be the day after his birthday. Still, his birthday is a time to honor his life and my love for him.

It may be inconceivable, but my dad was not a fan of Disney animated films. After all, he was a Marine! Who would have thought that I could draw a connection between my dad and Cinderella? Well, I can! Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950! She has remained dear to my heart since childhood because she was the first princess I loved. Of course, when I was growing up there were not as many Disney princesses, but as I have grown up, I have found that there is more to Cinderella than what meets the eye. She appears simply sweet and naïve in her dreams of love, but she had feistiness and determination, and also a loyalty to her father’s memory that I share with all my heart. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. Cinderella’s loyalty to her parents is made even more clear in Disney’s 2014 live action version of the story. It is something I completely understand to my core. I cannot ignore that while Cinderella had her sweet mice friends, my dad and I had our love of dogs and animals.

Cinderella knew the importance of integrity and the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect! She knew with all her heart that, despite her stepmother and stepsisters treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort and I could stand alone and live happily with them in my heart. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.

During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.

Maybe you don’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be okay. If you have not done that but find yourself with lots of jumbled thoughts, talking, writing, journaling or any form of art or craft are ways to explore your self expression.

There is a song in Cinderella called, So This is Love.  Though the song is about romantic love, the title is significant. When we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.

At the heart of the film is the song A Dream is a Wish Your Heart Makes.

A dream is a wish your heart makes
When you’re fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for, you keep.
Have faith in your dreams, and someday
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dreams that you wish will come true.

I’ve always been a dreamer who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Cinderella’s Fairy Godmother said, “Even miracles take a little time.”

Cinderella (1950) Walt Disney Productions

My dad called me his Private Benjamin, but I was also his Cinderella- his treasured princess- and I will always keep his spirit alive and let him guide me.

Happy Birthday, Daddy! I always hear your giggle in my head and I love and miss you!

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Finding the Pixie Dust On A Difficult Valentine’s Day

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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!

Eight Years Without My Dad and What Winnie The Pooh Understood About Goodbyes

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Today marks eight years since my Dad left this world. For the past few days, I have found myself thinking of the bittersweet wisdom of Winnie the Pooh, who said, “How lucky am I to have something that makes saying goodbye so hard.”  I can relate to this. Unfortunately, February is a month filled with reminders of the many goodbyes I have had to say. The month is marked by my dad’s birthday, Ben’s birthday, and the anniversary of my grandmother’s passing. A few years ago, on my cat Disney’s last day, I told the vet it might as well be in February, since nothing good happened in this month.

After yesterday’s 60 degree weather, today there was snow. On the day that my dad died there was such a severe snowstorm that the trains, buses and cars had all stopped and I could only speak to him on the phone. I can’t stop those bad memories, but at least, for the most part, I try to focus on the good ones, on his sense of humor and laughter, and how much love we shared. He had unwavering faith in me that I wish I had in myself. This always plunges me into the profound sorrow of loss and aloneness. I miss my Daddy.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

In a February of heartbreaking events, Valentine’s Day was the one occasion in which I could find joy, even after I lost Ben. I have hand-made cards for my family since I was young and I have continued that tradition. It did not matter if there was a romance in my life, I was enamored with the idea of sharing love. As my family disappeared, I learned that my great-aunts and great-uncles saved the cards I had sent them, and many even made their way back to me. It touched my heart that the cards (and I) were loved. I began a tradition of making cards for my friends. It is my special (and maybe corny) way of showing my friends how much I value them. It has also been a positive distraction from focusing on grief.

Last year, my aunt Eleanor died on Valentine’s Day. I remember feeling frustrated that due to COVID, I would not be able to visit her and bring her a card. Even when she was almost completely nonverbal, Ellie always smiled at her card, and she seemed to love to look at the featured pictures of my cats. Although her quality of life had significantly declined due to Alzheimer’s disease, and she was in a nursing home, I was crushed to lose her. Sandwiched between the day my dad died and his birthday, Valentine’s Day was already kind of surreal, but Ellie’s passing made it a three-day streak of awful anniversaries.

I tend to waver about doing things or maintaining traditions that fall on milestone dates. Interestingly, there was never a question in my mind that I would continue to make my Valentines. Maybe I have become even more intent on making the cards because they allow me to delve into my creative self-expression and to feel joy and life as I think about my friends and the love that surrounds me. It is a form of self-care that hopefully brings smiles to my friends, even though Tinker Bell would be just as happy without her starring role.

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

In the Disney Pooh’s Grand Adventure: The Search for Christopher Robin, Christopher Robin tells Winnie the Pooh, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you. I have written so often about how I see my dad in many things that I do and in who I am as a person. I am proud to be his daughter and always hope that I am making him proud and doing justice to his memory. I hear his giggle in my head. I share stories about him with my students. They know, and quietly respect, that every day, I stand for and recite the Pledge of Allegiance because he was a proud Marine, and I believe that they learn compassion and respect by observing me. My dad would appreciate that. The thing is that February’s bevvy of milestone dates is an ongoing reminder that it is not always enough to have the memories. At least Valentine’s Day gives me an opportunity to acknowledge the important people who are present in my life now. Particularly as I have been facing my own health issues, surgery, and treatments, my close friends have been the support that gets me through the aloneness. This would make my dad happy and relieved since he always worried about me and my future when he and Ben were both ill.

I cannot deny that this is a difficult time, but the silly little bear is right that although the goodbye still hurts, I am so fortunate to have loved and to have had the love of my dad. That love will always be my Valentine.

Never Underestimate the Power of a Hug!

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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

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