do you see what i see?

8

160625-mom-over-the-rainbow

 

On August 25, 2011, I spotted the full arc of an exceptionally brilliant rainbow stretching north/south over the field across from Mom’s big red brick house on the hill. I grabbed my iPhone and Mom’s hand, and we crossed the road to get a better view. But rainbows are fleeting and in the short time all of this took, the rainbow had begun to fade. Still, traces remained in the misty clouds, and we admired its spectacular beauty while it dissolved into the afternoon sky.

Mom, who had a lovely voice, started to sing; she knew the words to literally hundreds of songs. Somewhere Over the Rainbow was one of her favourites; we sang it together dozens and dozens of times over the next five years. Strangely, she invariably substituted “never” for “really” in the verse about dreams coming true.

I’m grateful to have recorded many of the roller coaster moment Mom and shared during our last decade together. I filmed the two videos below in August, 2015, and June 2016, when Mom was accompanied by our friend and healing music master Eric Manolson on piano and guitar, respectively. In April 2016, Mom’s eyes began doing odd things. When she concentrated hard on speaking or singing, they crossed and locked, and then sprang back to normal when she softened her focus. I asked her if it hurt. She said no. She knew if and when she was in pain. She also recognized and felt joy and love.

Some people might look these videos and say “How sad. See how she deteriorated? See how the disease ravaged her mind? She’s just a shell of who she was. What a shame. What a tragedy.”

I see something different–something beyond that.

When I look at these videos, and the changes in Mom over time, I say to myself: “See how she loved to sing, and she sang until the very end? See how she appreciated beauty, engaged life, smiled, laughed, interacted with others, and expressed joy and pleasure despite living with dementia? See her courage, her determination, her ferocity, and her indomitable spirit, which people failed to crush, even with deadly drugs? See how she was not defined by Alzheimer’s disease?” These are the things I see.

I am inspired by how Mom made the most of her circumstances, no matter what they were. Aphasia may have prevented her from articulating her thoughts in ways that were understandable to others. But I understood her. She may have been confined to a wheelchair most of her last year, but I helped her walk a little bit every day. Her brain may have been damaged beyond repair, but I believe it was able to compensate in small ways for the overwhelming losses in capacity. Even as the disease evolved, Mom was more herself than ever: I saw her clearly. I witnessed her journey, and I will continue to honour it and her by telling her story. What a blessing. What an opportunity.

She’s not physically close like she used to be, but thanks to music, love and connection, I will always know where to find her.

 

 

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8 Comments

  1. A wonderful and moving post, Susan. So uplifting. Thank you for sharing these videos and your example of understanding and support. The eagerness and animation in your mother’s eyes in the third video, as she recognizes the song, is absolutely beautiful.

  2. sonia szynkarski on

    So beautiful…..It made me cry as my Mom is also in the late stages however she has lost her speech…She smile a lot and today she said my name for the first time in months…..The doctor said she did not have long to go this was 3xweeks ago….My Mom has fought with everything she has and has bounced back…. however I stillI cherish every moment I have with her like you did……And YES each journey is different….However I still believe today when I was sittting with my Mom for a few hours palying music to her and singing to her she knows its me and she listens and enjoys the music…..I will always remember that lovely song now…..Somewhere over the Rainbow and think of your lovely Moms voice…God Bless her

    • Oh Sonia! Thank you so much for your beautiful testimonial about the time with your mom. Yes, each journey is different, and I also believe as you do that your mother knows it’s you that’s with her, and that you love her and that you are giving her the best possible gift she can have at this time, which is the gift of your heart. Bless you and thanks for remembering us whenever you hear this touching and hopeful song <3

  3. I’m following your advice Susan and have some wonderful clips of Maureen. You are AMAZING and one day I’ll tell you to your face. In fact I will need a world cruise to catch up with all those people who support us on our journey.

  4. Susan, I am both crying and smiling after experiencing these videos. So poignant, so beautiful, and such a great illustration of how your mom’s essential being stayed alive and vital throughout her journey. Thank you so much for sharing. I will always think of her, and you, each time I hear that lovely song.

    • Thanks Kate for your touching comment. Yes, I think it is a great illustration of how Mom’s essential being always remained and in some ways even more clearly revealed as the disease evolved. I think people only disappear when we make them invisible. It’s beautiful to know you will think of us when you hear that song – it’s the perfect way to keep Mom’s memory alive <3

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