Finding the Pixie Dust On A Difficult Valentine’s Day

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized 2 Comments

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. 

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!

Embracing Gratitude During and After Caregiving

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized 0 Comments

Today is Thanksgiving. Since I always take comfort in Disney, it stands to reason that I would be drawn to a quote from 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.

Thanksgiving has become a bittersweet event for me. It is a holiday that reinforces that I’ve lost the family to which I was so close. I had a lovely celebration with dear friends, but that ride home by myself to my apartment remains painful. I don’t know what I would do without the company of Tinker Bell, who is very vocal in her delight to welcome me home.

I know that I am forever changed and influenced by my experiences as a caregiver for Ben and Daddy, and then losing both of them within a short time. Thanksgiving carries a lot of difficult memories for me. 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 feeling understandably low about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. I still find myself staring at the turkey gravy display at Trader Joe’s reliving the laughter and tears of my making all sorts of combinations of foods for Ben in the Vitamix as eating became increasingly difficult for him. I always had many boxes of Trader Joe’s turkey gravy because Ben liked it mixed with chicken and mashed potatoes, and I mixed it with all kinds of things to create a puree that he liked, including, if you can believe it, teriyaki chicken! Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to change our view and feel gratitude was indeed a superpower, because it gave us perspective that allowed us to always see the love that was there and be present in the moment. Now, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

In these times, I turn to Mary Poppins, who said in Mary Poppins Returns, “When you change the view from where you stood the things you view will change for good.” As I have worked through my own experiences, I also recognized that many students were also stressed because they were caregivers, either for family members who were ill or even for siblings who they were helping to raise. In my classes, particularly when teaching remotely, I gave voice to students who were struggling with those responsibilities. I began a club at school to support students who were caregivers. The club attracted a group of students who were not necessarily caregivers but were compassionate and caring. Pre-COVID, we raised funds to help the animals affected by the wildfires in Australia. During the pandemic, we conducted remote journaling workshops for teens in residential centers. I shifted the view from where I stood and realized that these were students who wanted to help others and in fact, they were giving care and compassion. They felt good and the feeling spread. I did journaling and other self-care activities with them, and then I helped them to create their own workshops for other students. They supported each other, with advice about school, family and life. I was thrilled to see their friendships blossom. Also, it was inspiring to listen to their discussions focusing on ways to care for others, through activities, fundraising and volunteering.

We had a club “Friendsgiving” at our recent club meeting with apple and pumpkin pies, cookies, candy and beverages. We talked about possible activities and ways that we want to help and bring kindness to each other, students in school and community groups. We talked about gratitude, and how even when things are not going well, finding one tiny thing to be grateful for can spiral into a mindframe of gratitude. I wished them a wonderful holiday weekend and reminded them to do something kind for themselves. That’s not always easy for my students. But, I like to remind them that self-care is also caring.

Yesterday, one of the students in my club brought me this card. It touched my heart more than she could ever know.

It filled me with more gratitude. I am grateful that I was able to form this club and provide a platform for these lovely students to be the giving and thoughtful people they are. I feel oddly grateful that I was able to channel caregiving and grief in a positive and productive way. I would not have conceived of the club without that experience. As I see it, through my club I am paying loving tribute to Ben and my dad. I am reaching out to caregivers with a safe and compassionate environment and nurturing my club members with opportunities to spread kindness, be supportive, encourage self-care, and help others. I am so proud of my students. At a time when teaching could not be more disheartening, I am grateful to find fulfillment through the students in my club and the possibilities of reaching many others.

As always, Walt was right. Being in a state of gratitude has created an awareness of and continuous expansion of things for which to be grateful. So, in that spirit, I would also like to say that I am thankful for those who read my blog posts and share their own experiences with me. I am grateful for the inspiration of caregivers and carees who bravely and innovatively navigate life with ALS and other illnesses.

Happy, healthy and reflective Thanksgiving. Do something kind – however small or large- for yourself.