The Experience of Time and Memories
by Jo Kaur, Founder, Riaan Research Initiative
(April 27, 2024) - Last night I asked my husband Richie if he remembered what it was like before we had Jivan, our second child. What was life like when it just me, him, and Riaan?
“Calmer,” he said. “Things were less chaotic.”
I told him I remembered it differently. Everything felt much harder although if I could go back in time, I would tell myself: “You think one is hard? Wait until you have two!” I have no doubt that parents with greater than two children have an even more evolved perspective.
Things felt harder back then because I had less experience as a parent, and on top of being a first time mom, I was also dealing with all of the learning, grief, and fear that came with Riaan’s Cockayne syndrome diagnosis and day-to-day management. I’m still dealing with it but time does funny things. Human beings learn to adapt and then with adaptation comes a strange sort of complacency. The more we move away from Riaan’s diagnosis day, the easier day-to-day life has become but I’m also in danger of entering a reality where I feel like it never happened. Because thankfully he’s stable and happy, and the sharp pain from diagnosis day has somewhat receded. But that’s not how the world works. Bad news doesn’t just disappear.
All we have is our memories, they tell us grieving folk. But what if you can’t remember things as well as you would like, even when you’re desperately trying to hold on to every moment, make it feel as tangible as the glass of water in your hand? While recently cuddling with Riaan at night, I closed my eyes and thought of all the times I had put him to bed. This was my happy place. Surely I’d remember every moment with great clarity. But it feels like a blur despite occurring every night for over four years now. I tried to zero in on a specific night putting Riaan to bed, reflecting again on a time when it was just the three of us.
I was somewhat successful, and this filled me with hope.
A month before I became pregnant with Jivan, we drove up to the White Mountains region of New Hampshire for New Year’s Eve. It was a five-hour drive from New York City. We decided to leave late in the evening, after Riaan’s dinner, and wound up in a small town in southern New Hampshire for a brief overnight, around 2 or 3 am. Riaan was asleep in the car but woke up as we carried him up into the hotel room. I remember the hotel room: a huge king-size bed that Riaan loved, bouncing up and down, all giddy, even though it was the middle of the night. From the window, we were able to see the town square, and a beautiful Christmas tree, with all of the festive lights. I remember changing Riaan’s diaper, and then getting into bed with him as Richie brought up our luggage and bags (there are always so many bags when traveling with Riaan). We cuddled up, Riaan in a great mood despite having his sleep interrupted, and fell asleep together, feeling warm, cozy, and pleasantly fatigued in this quaint hotel in the middle of a town square, in a tiny town, as winter raged outside.
Flying back to the current moment, I recognized the wisdom of philosophies that remind us that there is no past, and there is no future, only the present. Yes, you feel the most intense feelings in the present, that is obviously true. In the here and now, nothing else exists. Except it does. It’s all still here, and we want it to be. When you are struck with grief, time no longer feels linear. Grief changes how we perceive time. It becomes a circle, and the past must be alive and here because otherwise how do we remember and honor our loved ones, especially those who have passed? How do we hold on to the memories we wish to retain forever with the clarity and intensity of the present moment? I don’t want to ever forget my happy place. I want to remember every night of it. But I can’t. It’s just not possible. I can’t remember it all. My mind, my brain, will only allow me to remember certain moments, and even those moments have a fuzziness, a lousy screenshot if you will, that fail to fully capture the actual experience.
Although time seems to move only in one direction (we know the past but not the future), I would like to think I know a bit something about future me. Future me would come back and scold me and say, “Do you know it can get worse? This is your era of happiness. Just live it, just enjoy it. You have it all right now. You’re the luckiest person in the universe.”
When you’re on a crash course toward possible ultimate grief, the worst pain a human could experience (the loss of a child), what do you hold on to? The past? The present? How do you keep it all alive? How do you transform the past into the present? And do you want to? Yes. I do. Sometimes.
Maybe you share moments as they happen, as much as possible. Maybe you write things down. Today, I want to share an example of something that was such a clear demonstration to me of how bright Riaan is, and how much he understands. Last night, he didn’t want to sleep, and I asked him if he wanted to go for a walk outside. He said, “Aye,” which is his way of saying yes. And then he gestured toward the front door with his arm. We grabbed his coat, hat, mittens, and socks, and began to put them on him, and he was excited beyond belief, grinning from ear to ear. It’s a small example, and I doubt it will impress many people, but it’s an important reminder to me that despite being nonverbal, despite the severity of his disease, he’s here, he’s alive, and he’s super smart and aware. He’s a wonder.
I’m so proud of him, but mostly I’m in awe.
As I wrap up these musings, I want to note that we have some very exciting news to share soon about our Cockayne syndrome gene therapy program under development at UMass Chan Medical School.
Stay tuned, and please continue to support this groundbreaking work at riaanresearch.org/support. We’re still a million dollars away from reaching our goal of raising four million dollars. Thank you to each and every one of you who have been with us on this journey from day one.