This time of year is a triple threat: the anniversary of my mom’s death, mother’s day and then her birthday in quick succession. This year marks 25 years since cancer took her from me and my four older siblings. She would be 75 this year. And it marks something else. It marks the first Mother’s Day knowing that I will outlive my only child, Cora. What a full circle moment. I was a child who slowly lost her mom and now I am a mom who is slowly losing her child. Neither “should” happen to anyone, and yet there is nothing to be done to make it turn out another way.
My darling girl has a rare genetic disease: Infantile Tay-Sachs. When we embarked on our diagnostic journey last year, it was presented as the worst case scenario. The best-case scenario was blindness. I would be thrilled to trade diagnoses, given the perspective of being 10 months post-diagnosis. This wretched disease is without a cure and has few experimental treatments to slow down the inevitable. We have chosen not to get in the way of the disease, but to meet her daily needs and love on her as much as possible. And yet, there is peace in our household—it found us. We could try to fight this disease that will win; we could try to run away; or we could go with it.
There is peace in acceptance of defeat. It surely doesn’t extinguish this sadness I feel as I hold my toddler-who-doesn’t-toddle as she coughs, sputters and aspirates tiny droplets of death and cries out in pain. But, it allows me to coo, talk soothingly and sing show tunes, just as I would if she were entirely healthy. The peace allows me to stop what I’m doing and relish the moments when she just wants to be held for nap time. It inspires me to take her to places that are meaningful to me. Peace gives me solace, knowing that it is out of my power.
So, last year was my first Mother’s Day with a baby in my arms. And even though we didn’t know Cora’s diagnosis yet, it still didn’t turn out how I wanted. I had fabricated this idea of perfection and had no idea what it looked like. This year I found myself doing the same thing. I checked myself. “Keep it simple. Keep it meaningful. What do you really want?” I don’t really want to be celebrated. People tell me how awesome I am for raising a terminally-ill child, and it doesn’t ring true. This job of ushering her towards a beautiful death was thrust upon me. I would take being an “OK” mom to a typical child with a typical lifespan. That would be just fine with me. What do I want thisMother’s Day?
I want to remember her. I want to be able to remember her. I want the pain, when I can no longer hold her, to be tempered. I know what it is like to hold on to fleeting memories—that Mylar balloon I bought for mother’s day for my mom when I was in 4th grade. I remember paying in nickels and pennies. I remember the lady at the florist pitching in a dime. I remember riding home on my bike with the balloon twirling and tangling around me. I want to remember the smile on my mom’s face when I arrived home; this is how I know it happened.
A few weeks ago we went to the National Tay Sachs and Allied Diseases conference with 250 other people. I saw parents of deceased children yearning to hold my child. I knew in advance that many of the moms were looking forward to snuggle time with the youngest affected kids. I didn’t understand it until I saw it. They longed to reconnect with their own deceased child, that desire for connection was palpable. This, I recognize this. I know this. I lived that for many years. Years in search of a somatic experience to connect me with my mom.
So this is it. I’ve been giving myself a gift all along. I have been sharing Cora, and, in time, she will be given back to me. When months and years and decades have passed, those people who have held her, heard her laugh, saw her beauty, heard her match pitch, noticed her milestones come and go, saw her able to connect with us – those people will be able to give her back to me. That is what I want for Mother’s Day.
Thanks to NTSAD for sharing this piece for us, as originally posted here on Courageous Parents Network. NTSAD is leading the fight to treat and cure Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases. Learn more about this organization here.