"In the midst of darkness, light persists."
- Mahatma Gandhi
When we realized how dire Mama Hop's condition was; when the doctor told us it was time to look into hospice care, panic set in. Every thought that raced through my mind led back to Leanne. Should she see mom like this or should her last memory be a more healthy version of mom? Should I prepare her that death is imminent or is it unfair to cause premature stress and grieving?
I grabbed my mom's "Mental Wellness in Adults with Down Syndrome" and I scanned the index for a chapter that may address this. I began googling things like "Down syndrome and grieving" and "Loss of a parent Down syndrome" hoping that I'd find a step by step guide that told me exactly what to do. I stumbled upon a listing for a seminar on the topic that occurred back in May. There was an email address to register for the webinar and I decided to go for a shot in the dark and sent a desperate email.
Within hours, I received a response telling me that the woman who conducted this seminar is on maternity leave but that my email had been passed along to her and she was happy to help. She wanted my phone number.
Are you kidding me?! A total stranger from the East Coast who just gave birth and has no obligation to answer an email, yet alone help a stranger was willing to take my hand and guide me through this process?!
That day, I received a call from Melissa Levin who gave me the following "homework": Find an activity that your mom and sister enjoyed doing together and have them do it.
I scanned my brain and mosaic glass work immediately came to mind. Several years ago, after my mom retired from teaching, she attended mosaic art school in Ravenna, Italy. She came back home and mosaiced (is this a legitimate verb? Probably not. Just go with it.) everything in sight: from bowling balls to my kitchen table. It was an obsession! In Leanne's current day program, she cuts glass and creates beautiful works of art. I immediately called her supervisor and told her that while I realized she was incredibly busy with the year's biggest fundraiser happening the next day, is there any way we could create a glass project for my mom and sister to complete together? She stopped what she was doing and set aside a package to take to my mom.
That night, when Travis returned from his business trip, Leanne and I left the girls in his care and went to see Mom. We picked up her favorites: crab dip and Pinot Grigio and we gathered around a small bedside table.
Together, Mom and Leanne delicately glued glass beads to a small plate. The beads were comprised of various shades of their mutual favorite color: green.
That night was a gift. When we returned the next morning, Mom was no longer able to lift her head up off of her pillow. She had rallied to give that last burst of energy to Leanne. It was a beautiful evening; a memory that is forever preserved in this tiny glass plate. Which leads me to another piece of advice offered by Ms. Levin: Ensure that Leanne has a tangible object that calls to mind a positive memory of our mom; something she can hold when she wants to reminisce and feel closer to her mom.
I am reduced to tears when I consider how many people went above and beyond to make that night possible for us. This past summer was a heartbreaking journey; witnessing someone you love endure hardship, suffering, and pain is torture. But as heavy as the weight was, and as dark as the journey got, moments of light illuminated our path. Those moments help steer us back to the important focus: the beauty that exists and the blessings that remain.
Leanne says that Mom visits her every night in her dreams. She tells Leanne that she loves her and she encourages her to keep praying. Leanne says "Mom is in a better place" and she maintains faith in the fact that they will be reunited someday. For now, Leanne does not dwell on the past, nor does she worry about the future. She exists in the moment and she exudes faith and love.
She is a light.