Age is just a number, especially thanks to you, because you bring out the inner child in all of us.
I always miss my mom and Ben on this day. They surely would have celebrated the magic. I must admit that I feel pretty lonely at times like these. 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!
When Ben and I began our relationship, 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 have kept those.
We always treasured our visits to Walt Disney World, so after Ben’s ALS diagnosis, the first thing we did was book 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.
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, 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. You both made a fuss over him and gave me the hugs of support that you just knew that I needed. I will never forget that.
For as long as he could, Ben would insist on getting out of the scooter and walking to stand in his pictures with you. It was when he chose to ride his scooter and then electric wheelchair up to you 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.
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 was so happy to see you both when I returned to Walt Disney World back in October of 2019. I was grateful to have an opportunity to thank you for all that you did to raise our spirits and levels of hope. Although sadness loomed due to Ben’s absence, hugs from you let me connect with the past, feel secure in the present and know that I can count on you when I hit bumps in the road in the future. That is quite a gift!
I continue to find comfort and optimism from you. I look forward to returning to Walt Disney World and seeing you in person to get some pixie dust and Disney magic.
On your birthday, I shower you with tremendous gratitude, loyalty and love.
Happy Birthday, Mickey and Minnie. May you always continue to be the spark of hope, inspiration and happiness for children of all ages.
Today is Veteran’s Day, and yesterday was the 247th 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 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.
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.
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. I think about what Archimedes said in The Sword and the Stone- “Man has always learned from the past. You can’t learn history in reverse.” I don’t think that we are learning from the past. In fact, it seems that some leaders want to repeat some of the devastation of the past. In many ways, our civil rights movement has gone nowhere and this country is falling back instead of stepping forward. It scares me, and I fluctuate between wishing so much that I could talk to Daddy about it and being relieved that he is not eating his heart out.
Regardless of my disappointment in what I am seeing in 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.
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!
As Rapunzel wisely stated in Tangled, “That’s the funny thing about birthdays, they’re kind of an annual thing.” Maybe it is for this reason that I could not determine what I wanted to say in this post. Birthdays happen. So do holidays. October is my birthday month and it is Halloween. Grief makes holidays difficult, though I have learned to accept the setback and tears and to embrace the good moments. Ben and I loved to go to Walt Disney World to celebrate at Mickey’s Not-So-Scary Halloween Party. He even proposed to me at Walt Disney World on Halloween, asking me to be his Minnie. Now, Halloween and my birthday serve as an annual occasion to think about those memories. The thing is, it has also become a time to reflect on how I have adjusted and shaped my life. Maybe it is a bit scary to feel that I have not come as far as I would like.
Last year was a milestone birthday, but it arrived with a breast cancer diagnosis. It is difficult not to think about that. Gratefully, I am still here. And, I am so fortunate to be fine. Still, I do not really like to celebrate myself. It was fun and romantic when Ben planned birthday activities. I enjoyed planning them for him, too, and I enjoy participating in plans for others. Not for myself. I am already keenly aware that I have been gifted more years on this earth than my mom and Ben. That is a lot. I appreciate kind wishes from friends, colleagues, and family. Each year, as my birthday arrives, I want to be able to say that I accomplished something, contributed to the lives of people and animals in some small way. I want to feel that I have grown.
It may seem strange, but this year I realized that I measure a great deal of my personal growth and how far I have come in my co-existence with grief by how I honor Halloween. Although most of my childhood birthdays were Halloween-themed, I attach much of Halloween, and my strongest Halloween memories, to Ben. We loved the fall weather and walking around, spotting fun Halloween decorations. We listened to Disney Halloween music. When Ben was homebound, I decorated the apartment for Halloween, usually after I put Ben to bed, so he had a fun surprise in the morning. He could often be found watching our videos of the Walt Disney World “Boo To You” parade. I have the soundtrack with that music, and I still listen to it almost every day of October, picturing Ben’s face and delight. When I took Ben to Walt Disney World for the last time in July 2014, I had our hotel room decorated for Halloween. All of those decorations came home with us. Several of those decorations were brought to Ben’s room in the hospice unit of the hospital. He loved being surrounded by those memories. After Ben left this earth, I had a hard time with those decorations. I put them in storage, and for a couple of years, I did not really decorate. I immersed myself in our memories.
After a few years, I went to storage and looked through our Halloween collection. I brought back to the apartment a few things that did not immediately make me sad. I decided that if I felt uncomfortable, I would just take them down. Annual traditions, annual tests. The Halloween banner that was placed outside our hotel room unnerved me, so it went back to storage. I did not bother to bring back many other items from our 2014 holiday because looking at them in the box at storage just made me miss Ben all the more. I felt that I was not entitled to enjoy them without him. Oddly, the Halloween countdown figurine that Ben adored proved to be a huge comfort. I still chuckle when I think about how he texted to tease me if I forgot to change it before I left for school in the morning.
Eventually, I purchased some new Halloween items, some Disney and others from another favorite store, the Vermont Country Store. It was a way that I held onto our memories but began to incorporate some new ones. Still, everything I chose was in some way connected to Ben. Each year, I tried to place the banner in the apartment, and each year, it never remained on display.
In 2019, I returned to Walt Disney World for the first time without Ben, but with my dear friend Monica and her two amazing kids. It was a tribute trip- to Ben and to my cat Disney, whom I had also lost and who was my last direct connection to Ben. It was challenging to face the memories but energizing and comforting to know that I could create new memories but have Ben with me in my heart. I brought souvenirs home that have also become a welcome part of my Halloween and Christmas decorations.
This year, once again, I pushed myself to rummage through the boxes in storage. For the first time, I felt prepared to bring almost all our Halloween decorations from storage to the apartment. Again, I told myself that nothing had to remain displayed if it brought sadness. I set out the big black candelabra and even ordered replacement LED candles for it. I placed the Halloween garland that I used in the apartment when Ben was homebound. I set out the banner, and, although for some reason I still feel somewhat bothered by its presence, I have kept it up. I ordered some new Halloween toys for Tinker Bell. I purchased some cute new Halloween toys- little Toy Story aliens dressed as other Disney characters, including Ben’s favorites: Buzz, Mr. Incredible, and Sully. The apartment has a Halloween spirit that Ben would love and that feels good. Actually, I talk to him about it. That, too, feels right.
About a week ago, I exited Central Park by our favorite block and decided to take a look at the brownstones, since they are always decorated so beautifully for the fun Halloween party that Ben and I almost always attended. The tears fell as I was enveloped by feelings of aloneness and missing the things we loved to do. Still, I was proud of myself for pushing my limits and embracing the memories as well as the tears.
I think a lot about a quote by Mrs. Frankenstein, from Frankenweenie. When you lose someone you love, they never really leave you. They move into a special place in your heart. Ben remains a part of my birthday and Halloween, even as I create new memories and traditions. He remains a big part of my annual Halloween cookie baking. This year, I made a cookie that featured the scene when Charlie Brown says, “I got a rock.” It was one of Ben’s favorite quotes. I know that he would have loved that cookie and it absolutely delights me that my friends responded so well to the image. I always feel like Ben and my grandma are with me when I bake.
I continue to cherish my walks through Central Park. During a recent jaunt, I was joined by a new little bird. It was intent on staying with me and as afraid of birds as I am, it did not fly or show a wingspan, and I have come to firmly believe that there is a reason for these visits. I took its picture and googled the bird and found that it was a tufted titmouse. I read that if seen in a dream, this bird signifies a breakthrough, good luck and a change in life. I like to think that he meant that for me.
Despite not going out of my way to acknowledge my birthday, Rapunzel is right that birthdays are an annual occurrence. This year, my annual Halloween preparations showed me that I am continuing to adjust and shape my life in positive ways. I hope that I can always say that upon reflection, my year was meaningful and productive.
It is time once again to brace for another school year. Summer is a time filled with so many difficult memories, particularly Ben’s last summer spent in the hospital. As excited as I am to end each school year, there has always been a bit of dread because I know that I will be haunted by those memories. Each new school year has conjured memories of my often unsuccessful attempts to balance full-time caregiving with full-time work. The quote that always gives me pause was said by Cinderella’s Fairy Godmother in the 2015 Live Action version of the film: “Time passed, and pain turned to memory.” Seven years later, I can say that the pain is still felt. It is felt differently, and is not as debilitating, but particularly on milestone dates, and at times like summer and the beginning of a new school year, the memories are still gutting. However, for the first summer in seven years, I felt like a whole person, and I gave myself permission to feel alive. As much as I lament crossing the threshold to another school year, I hope that I do not allow school to defeat my spirit!
Maybe because I underwent my own medical issues with cancer treatment over the past year, I was intent on following doctors’ orders to relax and enjoy my summer. I made plans that excited me, traveled for the first time since the pandemic and visited some of my very favorite people. I felt like I had come into my own, doing things that I love, happy when they honored Ben and our relationship, and feeling comfort at looking at things through his eyes, but not doing anything solely for that purpose. For the first time, I realized that although I will always feel heartbreak that Ben was cheated of so much time, and that we were cheated of our time together, I did not feel guilty about living and finding joy in the fun I planned.
A few years ago, one of the first things I did on my own was fly to the Georgia Aquarium to do animal encounters. It touches my heart very deeply to interact with animals. It was an indescribably moving experience to feed Mara and Gibson, the two baby sea otters I had followed on social media since their rescue; to dance with a sea lion; be kissed by a beluga whale (and even get into the water for it!); and to actually touch a penguin! When I took that trip, there was guilt for enjoying an aquarium without Ben (click for that blog post). There were many tears and there was loneliness, but I took pictures I knew he would have taken, and I mentioned him in every social media post. The only way that I could justify the trip was to make him a part of it. Still, it was a big step to plan and take the trip the Georgia. Of course, it was motivated by my love of animals and fascination with the aquarium I had read about for years. But, it opened my eyes to how much it means to me to be around animals.
The pandemic made most animal encounters impossible and, at least for me, travel was out of the question. While I was undergoing cancer treatment, I made a decision that this was going to be a summer that brought me back to the people I missed and that nurtured my profound love of and connection to animals. Turtles and penguins were precious to Ben and me, but my deep passion for animals goes back to my childhood and was instilled in me by my parents. Central Park is a place that I love because it is so beautiful and peaceful, and it was indeed healing during daily visits after radiation, but I am most delighted that I have developed relationships with the squirrels that I feed. I feel protected by the cardinals and am very proud that I even developed a relationship with some blue jays, who have learned that if they do not steal the food from the squirrels, I will give them their own peanuts.
For years, I had read about an animal sanctuary called Nurtured by Nature, where you can swim with river otters. Otters are my favorite animals- sea or river otters. Swimming with them was my dream, and it was also a place that was always booked. I finally saw some available slots and Ruth, my very best and oldest friend, humored my desire and drove us to this secluded but almost enchanting location. While Ruth definitely would not like Fairy Godmother or any other Disney-ish status, she made my dream come true. The otters were so playful, curious and as cute, and being face to face with them was more delightful than I even imagined. We also got to meet and feed a capybara, armadillos, kangaroos and a ruffed lemur. The experience of being with the animals is so emotional it brings me to tears. Ruth has been there for me in the many good and bad times, and she was the person I trusted with my medical information and to talk to my doctors, so it was a particular delight to share this positive and whimsical experience with her.
To learn more about Nurtured by Nature, click here. It is a wonderful not-for-profit organization that provides unique experiences to children in need and their families, often partnering with Make-A-Wish.
Ruth surprised me with more unforgettable animal encounters at another amazing sanctuary called Wildlife Learning Center. We met and fed a bunch of darling animals including sloths, porcupines and tortoises. I was happy to learn that the Pixar folks used the resident sloth, Sid, as the model for Flash in Zootopia. They also used the Fennec fox as a model for the film, but he was hiding during our visit, which was a shame because fennec foxes are quite cute and I always appreciate a good Disney reference. I even got to hold a hedgehog, something I have been wanting to do! Scrabble was much more prickly than I expected but such a tiny, sweet hedgehog!
I have read for years about the San Diego Zoo and Safari Park, and they were magnificent. I saw my first live koalas, which was a tremendous thrill. Koalas have been favorite animals of mine since childhood, and they are probably the main reason that I want to visit Australia. I want to hug them! We saw so many stunning animals and I fed some giraffes, which was great fun, because they are such gorgeous and elegant animals, and their very long black tongues are funny and oh so strong! I cannot pass up any opportunity to get up close and personal with an animal. Well, not birds. Definitely not birds.
Our animal adventures continued at the Monterey Bay Aquarium, which was beautiful but a bit disappointing in that there were not many animals out in the Bay. I expected to see a lot of sea otters, in particular, and I think I might have seen one. I was told that kayakers do not follow rules, go into the kelp beds, and scare away the otters. How sad! The resident otters were great fun to watch in their habitat and I was able to capture their antics on film.
Ruth also surprised me with a visit to see the elephant seals at Piedras Blancas. What an extraordinary sight to see so many massive adult male elephant seals and young seals- lounging on the beach or bullying each other! The females had already headed back to Alaska and soon these fellows and their kids would follow them.
I must add that although animals were the running theme of our holiday, the other highlights included the Academy of Motion Pictures Museum (I saw one of Cher’s outfits there!), the La Brea Tar Pits and Solvang, the Danish capital of America. Throughout my visit I thought of Ben and how he would have enjoyed these experiences, and how much fun we would have had. Actually, my dad really would have loved to be there, because it was like living the National Geographic articles we shared. At the same time, and for the first time in seven years, I seemed to be fully myself, immersed in animal adventures that I discovered truly fueled me and were not about Ben or us. It was enough of an unusual sensation that it did register with me, but it did not make me sad or guilty, which was also a first. I chalk it up to yet another phase of grief to accept that Ben is always in my heart, but I can and will evolve and redefine myself, wholeheartedly delving into my life and maybe even discovering new joys. Little things can have big significance, and I am proud that I was emotionally ready to add to Ben’s and my Disney collection of mugs a new and fabulous sea otter mug from the Aquarium. I have used it every morning since I returned, and it shows me that, like the rest of my life, my Ben memories will intertwine with my new memories.
I am grateful that I returned from California feeling invigorated and inspired. I have been working on a few picture book ideas, and I completed the third draft of my caregiving memoir/workbook. I earned my certification as a grief support facilitator and look forward to supporting caregivers and those in various stages of grief. I do allow the undertow of grief to immerse me in the sadness and aloneness that I feel at times. Still, it feels good to know that I have grown to be more productive and that I feel more of a sense of direction, albeit with a lot of anxiety that I am trying to manage. Of course, as I reach to follow these new dreams, it is even more difficult to return to school. Although it is not where I want to be, I remind myself of my club, and it is my hope that I will continue to reach caregiving kids. This is where I will find the fulfillment that I need and that, frankly, can feed my desire for growth in a way that teaching, or the school system, more to the point, does not.
It stands to reason that after my animal adventures, I felt compelled to watch Zootopia. I was struck by the quote byChief Bogo: Life isn’t some cartoon musical where you sing a little song and all your insipid dreams magically come true. Chief Bogo was right. It reminds me of a quote by Walt Disney, who said, “Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.” While some might say it is childish and naïve, ALS, cancer, caregiving, and loss made me very well aware of life’s grim realities. A wave of the wand would not make my troubles disappear. However, Disney has helped me through some very dark times. It inspired and comforted me during caregiving and throughout grief. Disney helped me escape and to make sense of things that were happening. Disney helps me to understand my grief and has inspired me to look inside myself and push towards pursuing dreams like animal encounters and writing, which give me a sense of fulfillment. It does take time and effort to balance the light and shadows and to temper the struggles with growth and positivity.
As the beginning of the school year looms, I remember how I was known by my former school staff as Abby who ran in circles trying to take care of her dad and her husband and then who lost both of them. I remember that despite being relieved (for several reasons) that with my position in a new school I was able to shed that persona, I struggled that new people really did not know who I was, because those years, although the most challenging and heartbreaking, really represented the most important and meaningful time in my life. Now, some teachers know my story and others do not, and all of that is okay. I feel like I am again getting to know myself better and writing new chapters. I hope that reflections will always result in my being a new and improved version of myself and that, even if it takes time and there are shadows, that I can and will work to make my dreams come true. I take comfort in knowing that my dad and Ben, along with all my other loved ones, are watching and supporting me along the way. That said, an insipid song sung by a Fairy Godmother would be a good idea right about now!
Yesterday marked seven years since you left the world. As always, this time is filled with such difficult memories. I do not know what seven years of grief should feel like. I would never venture to suggest to anyone else experiencing grief what it should be like. I only know what I feel. I sat in our bedroom remembering our last night together in the hospice unit. You slept most of the time. I spent the night pacing the halls, sometimes sitting in your room and sometimes in the family room. I wrote in my journal, trying to make sense of the fact that you were going to leave the next day. I could not quite imagine what that would be like, and frankly, I was scared. I’m still grateful that you left this earth surrounded by love and music, and even Disney. But, it also still hurts me to my core.
I never know how I am going to feel on August 26, but my plan was to go to Central Park to bring watermelon to the turtles. I know you would like that, and I know that I feel you with me when I am there. After that, I would watch the new Pixar film, Lightyear, which I know you would have been excited about because of your love of Buzz.
The turtles were delighted with the watermelon, and I had my walk and cry. Central Park is very healing and peaceful for me. I listened to my Ben Playlist and immersed myself in memories. I also let the squirrels cheer me up and I fed them an assortment of hazelnuts, walnuts and peanuts. That is something that has come to bring me a lot of joy.
Unfortunately, it was also unbearably hot and humid. It reminded me of your last summer, when even as I left the hospital, sometimes in the middle of the night, it had not cooled down at all. I could not make the walk home from the Park and resorted to a taxi for just a few blocks. I came home feeling physically and emotionally awful. Perfect timing, I suppose. Lying on the sofa for hours seemed like the old days of immobilizing grief. I am glad and relieved that I recognized that I was not returning to that place. But, if I was having a setback, I would simply allow myself to have my moment.
After a while, I did watch Lightyear. Something that helps me when I miss you and feel that you have been cheated of an experience is to try to see and feel things through your eyes. So, I watched the film through your eyes. It began much as your treasured Star Trek episodes, with Buzz narrating just as Captain Kirk did. I cried as I laughed out loud and turned to your chair, commenting to you. I cannot deny that it breaks my heart that you are not here to see the film, even if your spirit is present, but I do feel like we are somehow together.
I think you would be really happy with the film. Although it is not Buzz as we know him from the Toy Story films, I think you would say that it was clever that a film was made about the Buzz that led to his beloved action figure. It has the science fiction aspects that you would get a kick out of, particularly because of the Star Trek kind of references. Buzz has to deal with I.V.A.N., the Internal Voice Activated Navigator, which is autopilot with a series of useless recordings like those that we all know and dread. It also reminded me of the things that were repeated ad nauseum by medical and other professionals that you never wanted to hear, denied and defied. They were infuriating but sometimes made us laugh.
There are also important messages that touched my heart about grief and the passing of time. Buzz keeps reliving a travel plan, and for him time barely moves, but those around him age and pass away. He has to decide if and how to pursue his mission- to stay where he is or to keep trying to solve the scientific dilemma. Staying where he is would allow him to live and age with the people he knows. As he sees time pass without him, at one point, he meets an older version of himself. Imagine looking at how your life and decisions play out. Imagine not being happy about it. Buzz also has the option of going back in time, though that would also remove some of the people he loved and knew in the life he did live. Throughout all of this, he is watching others live out their full lives in what we consider a normal sequence. I thought of you. You were cheated of a long and healthy life. We were cheated of growing old together.
If it was possible, should we go back in time? Or, jump ahead to see what happens and then maybe even go back and change things? I wish you were here. I wish you never had ALS. But, if we could go back to before your diagnosis, would it mean that you would not get it anyway? What else would change in terms of people, relationships and shared journeys? As things turned out, I am grateful that we had the opportunity to grow very close and say the things that were important and needed to be said. Maybe things just have to happen the way they do, even though they are not as we envision the story and without a necessarily “happy” ending. I have no answer.
Ultimately, Buzz and his crew want to know that they matter because of the missions they undertake. Please know that you mattered. You STILL matter. You are a part of everything that I do. Your experience with ALS led me to support other caregivers. It encouraged me to follow my passion for writing, which has opened new doors for me. It inspired me to find ways to build and nurture a caring community in school. It was hard to face breast cancer without you, but you, and our journey, did help to guide me. Although I still have a hard time embracing it, you let me know that I am braver than I believe, stronger than I seem and smarter than I think. I wish you were here to actually be a part of my life as it unfolds, twists and turns, yet you are central to all of it.
As is my ritual, I read through each anniversary blog post that I have written since the first year after you left. I see that I am purposeful about honoring you, while gaining more control over my own life. I remain reflective, and frankly, I think that is a good thing. I still do watch the video that I made on that first year. And, I made Mickey Mouse waffles, which make me smile because of how much you loved them. Also, because the waffle maker was a gift from a very lovely former student who knew and cared about the significance of waffles in our story. I was very pleased with my plan of visiting and feeding our turtles and watching Lightyear, because it was a way to honor you and us, and to do something new while still looking through your eyes. Yes, I do feel lonely, but I also know that you are always here for me.
After Lightyear, Tinker Bell and I sat with your Sullys and watched Monsters, Inc. I will never fail to be moved when Sully places that one last piece of the door that will let him see Boo again. I wish I could have that moment, but I know that you are always with me, and I am so thankful for the time that we had.
Ironically, though of course I live and breathe Disney quotes to make sense of life and loss, it was seeing Bruce Springsteen on Broadway last year on the sixth anniversary of your leaving that has had a tremendous impact on me (click here for more). I have reminded myself countless times of when Bruce talked about Clarence Clemons and how much he missed him. He said that it was hard for him to believe that they would never enter a stage together again. He conveyed that with his songs and performances that he was able to visit with these people – ghosts, as he called them- and that they are always with him. Bruce really helped me. These milestone dates are times that I visit with you, and they are difficult days. More importantly, now, you are the grim, grinning ghost whom I know with certainty is always haunting me, in a good way!
Now that you are free from ALS, I hope that you are running, eating and making music. I love you and I miss you every day.