by Jo Kaur, Founder, Riaan Research Initiative
(March 12, 2024) - Today is the third anniversary of Riaan’s Cockayne syndrome diagnosis. On March 12, 2021, the day he was diagnosed, I felt like I was pushed down a well. For weeks, I fell and fell, with no sense of time or stability, completely in disarray, shattered by the most shocking and devastating sucker-punch there was.
As I fell, worlds spun by, fast, some slipping away, possibly forever. Relationships. Jobs. Dreams. The future. Well-being. Life as we knew it.
It took some time to find my bearings. But eventually I crash-landed on a platform, a plateau, embedded into the walls of the well, long before I was ready to stop falling.
I landed because I had to quickly re-establish routine. I had a medically fragile child to take care of. He needed to be fed, bathed, played with, tickled, read books to, loved, and mothered. He needed my help. I had to get it together. There was no time to grieve.
We launched Riaan Research Initiative three months after Riaan’s diagnosis. It felt like we had built a sustainable fuel supply system on our tiny plateau in the well. The organization literally fueled my existence, and continues to do so, keeping me going, and giving us hope, hope that had been snatched away in that conversation with the geneticist.
“We know what’s going on with Riaan. And it’s not good.”
I’ll never forget his first words.
What do you mean it’s not good? How bad could it be?
On the first anniversary of Riaan’s diagnosis, my body surprised me. I was pregnant with Riaan’s little brother Lu. I’d made progress but was still stuck in the well. But our plateau looked nice. We were making it work, and there was a new blessing on the way. Still, I continued to fall, even deeper, more disconnected from the world above. I physically felt the turmoil, the consequences of the grief.
And now on the third anniversary, things are a bit different. The bottom of the well has transformed into a window, and through the glass I can see other worlds, other beings, who have fallen far deeper than I have, who have suffered far greater than I have, and it makes me truly understand my good fortune. Through this window, I have seen other parents grieve over the loss of their children. I have seen children suffering in life and death, in ways that I never could have imagined. A dear friend recently lost her beautiful five year-old boy to Cockayne syndrome. Anything can change, at any moment. And it can always be worse. My heart breaks for the pain of fellow parents, all over the world. Perspective is key. Perspective does not undermine or negate our pain. But it is critical to zoom out, to see the river from above.
Right now, Riaan is here with me, and he’s okay, he’s happy, he’s wonderful. He’s not without his medical challenges but he’s stable and content. On this anniversary, I am still experiencing my typical panic attacks, my feelings of immense anxiety, my fear. But I also feel invincible, I feel immortal because Riaan is here and guiding me, and he’s magic.
On our trip to New Mexico, where the bluest sky I’ve ever seen was illuminated by Riaan’s enchanting smile, it made me realize that more is possible. That maybe we don’t need to be stuck in this well any longer.
I’ll never be able to climb out of the well on my own. But maybe we can build an elevator.
We aren’t meant to stay in the darkness no matter how much we make it bearable. We’re meant to float, full of love, spreading goodness and wonder wherever we go. I know Riaan will light the way. That has always been his message to me, to the world.
The light above awaits. Will this be the year we embrace it?
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The work to develop a gene therapy for Cockayne syndrome is in progress. Thank you to our supporters for joining us on our journey of miracles, and literally making all of this possible. Donate today at riaanresearch.org/support.