Walt Disney World

Auld Lang Syne

January 1, 2017. I wish everyone a happy, healthy, and peaceful New Year. I’ve never been one to ring in a new year with lots of fanfare. Growing up, my family and I sometimes went to dinner and a movie, but celebrations were very understated and I liked it that way. With Ben, I loved to cook a fancy dinner and have a cozy night at home. Every beginning of a new year should be filled with promise. Should be.

After his ALS diagnosis, although we never really said it aloud, it felt like there was nothing good to look forward to. Being reminded of time passing is not a great feeling when dealing with a terminal illness.  There is no opportunity for a break when you’re a patient or a caregiver, so our routines were not altered during a holiday. I did want Ben to feel that things were somewhat festive, and I needed that, too. Decorating the apartment gave me a distraction but it also gave Ben a distraction, a change in his homebound environment, beauty to look at and whimsy. As his ALS progressed, there were no more fancy dinners, though we joked about my pureed creations. Our many Disney decorations surrounded us in beautiful memories. The ending of one year and beginning of another one came quietly and our only resolution could be to make the best of the time we had.

There was no way to know that our last New Year’s Eve would be December, 31, 2014. But, how wonderful it is that I can look back now and say that it was a very fun night that reminded us of the romantic, fun, and nutty times that defined our relationship. I ordered matching Mickey Mouse and Friends pajamas for us and even for Disney (from Pajamagram.com) Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. There is a brief video below. Don’t think it’s the video quality or the color calibration on your monitor, the fireworks really were that bad! It felt almost magical to laugh and enjoy the evening. And, it touches my heart still, that Ben woke up the next morning smiling and saying that he had so much fun. That silly celebration is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.

 

In my previous post, I explained that Auld Lang Syne is very meaningful to me. For last year’s holiday card, I placed photos of Ben at his happiest and most vibrant around the words to that poem. I needed to see that and I wanted people to remember him laughing and enjoying life. I still find that this gives me more peace than sadness. And, in the moments that it does bring tears to look at the pictures and think about the times we will no longer have, that’s okay, too.

ALS, Disney,Grief

Holiday Card 2015
A Loving Tribute to Ben

On this New Year’s Eve, I did a bit of celebrating, which says to me that I am healing. Those feelings can be confusing, because my joy does not mean that I have forgotten Ben or any of my loved ones. Words are powerful, and I do not like healing to be described as “moving on,” because in my mind it means leaving things behind, and I have not left my loved ones behind. “Auld Lang Syne”  represents for me an opportunity to honor those I have lost and whom I miss, while I try to find my way in the present. I am very fortunate to have had these people in my life, to have felt their love and to have loved them. They have all helped to shape who I am. And so, it is with love, and joy, that I remember these special people and share some of their pictures. They will forever be with me in my heart, and will watch over and guide me as I take another step forward to welcome a 2017 that I hope will continue to find a better balance between grief and love, joy, peace, and laughter.

My mom and our Standard Schnauzer, Dulcie. My mom and I were practically attached at the hip and not a day goes by when I don’t think of her, even after nearly 25 years. Dulcie was the best and smartest girl and she is also missed very much!

My dad with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker. Both of my parents instilled in me a tremendous love of dogs and animals.

(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

(L-R) Great-Uncle Davis, cousin Garry, who, at age 94, passed away just one month before Ben), and Great-Aunt “Tanta” Rosie.

A Tribute to Walt Disney (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2016 marks 50 years since he left this earth. I’m sure it’s no surprise that I love to read about him, and to get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from.  I remember my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. She was just a little girl when he was “born.” “Mary Poppins” was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. I believe that 50 years from now, and, as Buzz Lightyear would say, “to infinity and beyond,” Walt’s words of wisdom will still stand strong, as will his legacy.

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled me, intrigued me and entertained me.  Now, they are helping me to look forward and I think that’s especially significant as we approach a new year.

“That’s the real trouble with the world. Too many people grow up. They forget.”

ALS,Caregiving,Grief,Walt Disney World, Disney

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. My husband, Ben, always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to have to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt is right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiving,Grief,Walt Disney World, Disney

Grief is tricky. I feel myself take steps forward, and then something triggers a setback. The reactions people have to grief also vary. Some people expect you to “get over” loss within a designated time period. Some people want you to act like everything is fine, because they are the ones who really cannot handle the emotions. I do feel like there is more light in my life now, which sometimes makes me feel guilty but also makes me happy, and I know that the people who love and care for me are glad to see me beginning to enjoy life again. But there are also shadows, and I am not someone who likes to, or can, put on a show of emotions. It’s all okay.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiving,Grief,Walt Disney World, Disney

The Wishing Well at Cinderella’s Castle. We always wished for a cure for ALS. I still hope that wish comes true.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

ALS, Caregiving, Grief, Walt Disney World, Disney

This quote is my current inspiration for the future. I believe that my curiosity, desire to learn, love and compassion will carry me forward to find new and more love, laughter, peace and joy. I cannot deny that right now I feel a bit lost. At the same time, I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

ALS,Caregiving,Grief,Walt Disney World, Disney

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

“Laughter is timeless, imagination has no age, dreams are forever.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This is a comfort to me. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiving,Grief,Walt Disney World, Disney

That sounds like a good plan! Thank you, Walt!

A Happy Birthday Card To Mickey Mouse!

Mickey and Us
Happy Birthday, Mickey Mouse!

Since my blog is inspired by a love of all things Disney, I want to acknowledge the birthday of my favorite Mouse! You may turn 88 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!

 
You and I go back a long time. My mom 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! But, 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 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 our office (we met at work). 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 went to Walt Disney World several times together. Our first time was for my birthday, and we discovered the relatively new Mickey’s Not So Scary Halloween Party. Little did we know that we would be completely captivated by this event. We planned almost all of our visits to Walt Disney World around Halloween (and my birthday!)

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

Our first visit to Walt Disney World together! 2001

After Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World. 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. Ben sometimes joined me for photos, and sometimes he just took pictures and laughed at me. But, with you it was different. He always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional. While some people just see actors, I believe that to visit Walt Disney World is to embrace the fantasy and the whimsy and, besides, I believe in you. With an ALS diagnosis, you want 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 handed me a “diamond” 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.

 
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. Ben also had an incredible attitude, and he was determined to engage in life.

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

Mickey’s Not So Scary Halloween Party 2012

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. Those memories comfort me now.

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

No caption needed for the joy in this photo!

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

I will always love and thank you,

Abby

Not Your Ordinary Walt Disney World Halloween!

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!

Birthdays…Memories

Walt Disney World, Grief, ALS

At the Crystal Palace

Today, October 27, is my birthday. My second birthday without Ben. I guess that I often measure time that way now. Last year, I preferred not to deal with the day, staying home and basically throwing the quilt over my head. To be fair to myself, it was merely 2 months after he died.  It’s still emotional to think of celebrating events without him.  But, this year I decided to take myself to London as a birthday treat. It was another milestone to travel again, by myself, and to make it easier I went to a favorite place where favorite friends live, too. Also, a place I’ve gone many times without Ben.  It might seem strange, but I am proud of myself.  I spent a beautiful and reflective week there and I will write about that in another post soon. Now I’m back, and facing conflicting feelings- that childish delight about a birthday mixed with the sadness of not having Ben or my mom, dad and grandma- the people I was closest to- with me, and 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’ve thought a lot about the wonderful birthdays I had with Ben. Several of them were spent at Walt Disney World during Mickey’s Not-So-Scary Halloween Party and the Epcot Food and Wine Festival. I am so lucky to have had that kind of love and those delightfully whimsical and magical experiences.  As I’ve said before, Ben let his inner child shine and he completely indulged mine. Well, my inner child isn’t so inner- it’s front and center of who I am!

Mickey and Us

Here are just 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!

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!

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.

Birthday cupcake Birthday Hugs from Tigger

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.

Cinderella at Akershus

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.

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 felt his presence over the past year 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.

Tonight is parent teacher conference night at the school where I teach, which is kind of a good excuse to just tiptoe around my birthday. I do remember the one other 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.

Surprise Birthday

Despite all of the very difficult memories of Ben with ALS and in the hospital and hospice, I am glad to be able to recall with love and smiles, and yes, also tears, all of the wonderful times before our lives changed. Because those times tell the story of who we really were together.  Remembering that is indeed a most special birthday gift.

True Love