by Jo Kaur, Founder, Riaan Research Initiative
(September 12, 2023) - We took Riaan and his brother Jivan to the carnival. Well, sort of. Remember carnivals? I do. I used to love them as a kid, and believe it or not, not much has changed in twenty odd years. You still have the ferris wheel, the carousel, the hi-roller, the zipper, and all of those good time rides.
We weren’t planning on going in. It was packed. The boys are too young for the rides. Instead, we observed the festivities from a comfortable distance. Riaan was mesmerized by the lights and the screams of riders - a huge smile on his face, a sense of wonder in his eyes - but he was also overwhelmed. He kept turning away. There’s a certain strobe effect produced by the lights, and it can be taxing on the eyes (for any eyes, much less a child with a neurodegenerative condition). After about ten minutes, he began to complain and gestured in the direction of the car.
I understand why we had to go but a part of me felt an aching sadness. Why couldn’t we also just run through the crowds, ride to ride, carefree? Why do we have to worry so much about respiratory viruses? Even aside from that, Riaan could never truly enjoy such an environment. It’s overwhelming for him on many levels. We felt like outsiders, looking in. The isolated island that we as a rare disease family find ourselves on, living in a society that doesn’t quite understand, it all feels achingly lonely. Will people we know even understand the hardship, fear, and pain?
But most of my feeling was not sadness. It was happiness, revived by that sense of adventure that we could share in this moment together, even if it didn’t look like the way it does for other families. Even though we only stayed for ten minutes. Because they were a pretty good ten minutes.
And sometimes, all you need to survive another day as a CS family is a really good ten minutes.
As we made our way through the darkness to the parking lot, which was far away, we heard the sounds of a concert. There was a good song playing, I don’t remember the name of it now. My memory is not what it used to be - my brain reserving space only for anything involving the children - but it’s a song we all know and like. It makes us smile, sing along, and feel happy. I listened, and felt nothing. I wasn’t unhappy to hear it, it was pleasant to listen to on a summer's night. But I felt like a calm observer of another world, another time, and realized this was the consequence of lost innocence. You see, trauma robs you of your innocence, and there’s simply no way to ever get it back. When I was innocent and did not know the anguish of anticipatory grief and possible child loss, I could enjoy that song, and imagine myself at that concert, singing, dancing, living in the moment among all of those concertgoers, breathing in the essence of life, excited about the mysteries of tomorrow, and the possibilities that felt endless. The pain of The Diagnosis has robbed me of that.
I’m not sure how to explain or reconcile the different responses to these two moments - the carnival and the concert. I defer to you, dear reader, to decide.
Recently, I turned 40. I felt empty on that day but it was full of good moments, great ones indeed. I told a friend who is grieving the passing of her beloved husband about this feeling, and she said:
“When there’s such a huge void on the inside, these things are nothing but ordinary dates on the calendar.”
I had a lovely outing with my children: we fed them dinner at the beach while enjoying a colorful sunset that only August can produce. They didn’t complain, there were some laughs. When we got home, everyone presented me with a cake and a card, and Riaan and Jivan cuddled with me, as I blew out the candle and made a wish, praying earnestly for what I imagine is obvious to all of you. I enjoyed a lobster paella. Riaan and Jivan went to bed without much fuss and I felt grateful that they were alive and celebrating with me.
I felt so much joy and gratitude. But I also felt empty and sad. The duality is reality.
Other questions I’ve been reflecting on recently:
How could I be the luckiest person in the world but also among the unluckiest?
What is the purpose of lives which are so marred by grief? Is it to spread joy and rise above the worst of the worst?
Is it to show strength in times of the most extreme adversity? But does that actually help anyone?
Don’t we all suffer alone and succeed alone? Or are we indeed connected like drops in the sea, every action impacting others and the global chain of events?
We are a community. We must care for each other. We are all we have. I concluded this particular thought exercise on this more heartwarming note.
This past August, there’s been many really good sets of ten minutes. Riaan has enjoyed visiting the beach, parks, mountains, a petting zoo, and we’ve traveled short and even longer distances. We also had this incredible opportunity to meet with another CS family. We combined it with a beach vacation, and it was so wonderful! It felt like we could finish each other’s sentences and stories when it came to discussing our children: the journeys we had, the wonder and hardships we experience, the confusion about what was going on with our children before their diagnosis. A sense of shared relief to not be so alone on this path. And of course the instant love I think we all felt for each other’s kids, and how enamored we are by these perfect creatures. The smiles between Riaan and this little girl were precious moments I will never forget for as long as I live.
Life is not always rainbows and ice cream, though, as I like to remind. Humans are naturally inclined to focus on the positive but the bad and hard times are a critical part of the experience too, and they cannot be ignored.
One time we drove an hour to a lovely beach, and saw the sun setting on the water. The sand was white and beautiful, and the crowds were thin. We were excited, and ready to picnic. Riaan began crying incessantly and could not be consoled. He gestured madly towards the car. We packed it up and left. It happens sometimes. Most of the time he’s game, other times for reasons unknown to us, he’s miserable. We try our best to accommodate whatever he may need. Still this is a minor issue. He's stable, well, and generally happy. And as long as he stays that way, I don’t care if we drive ten hours somewhere and have to immediately turn back.
Health and behavior wise, his two major issues this summer have been painful bouts of constipation and his obsession with taking off his clothes (we’ve fortunately found some outfits he can't get out of but I miss his full wardrobe!). When we put clothes back on him, his cry is so loud and piercing, it breaks my heart (and makes me worry our neighbors will think we're boiling him alive or something).
As we enter the fall, I’m sad to leave the summer. It was fantastic to take the children out to new places, which isn’t so easy now that work and school schedules have taken over. The time we had before isn’t there as much anymore, and we may not have that much of it anyway given the circumstances.
A fear consumes me whenever the seasons turn. Today I clutched Riaan, and felt dismayed that I could feel his protruding ribs, prominently so. He is strong but frail. He is spirited but the disease is heavy. His burdens are tremendous.
It's not fair that innocent children should carry this much. It never was, and it never will be.
Yet his joy is endless, and his presence heals even the most damaged soul. He is forever our light amidst the turmoil.
For him, we’ll look for those good ten minutes wherever we can find them. They make all of the difference in the world.
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