Two Moms Take a Walk
Reflections on suffering in silence
by Jo Kaur, Founder of Riaan Research Initiative
(January 13, 2025) - Every week day, two neighborhood moms take a walk. I see them outside the window as I sip a mug of coffee. Like clockwork, around 9:30 am, wearing yoga pants and pushing their infants in sleek strollers. I don’t always see them through the window though. Sometimes I’m driving by them, other times, I’m sitting outside with Riaan and Jivan and they stroll by, their ponytails swinging back and forth. They seem happy, and deep in conversation, no doubt enjoying each other’s company and the exercise. They always wave hello, as they pass. It’s become sort of a ritual.
Seeing them one day, I felt a wave of sadness wash over me. I remember when Riaan was a newborn, and Richie had gone back to work, I was home alone trying to learn how to take care of an infant who was struggling to drink milk. A friend who lived nearby also had a baby about a month after me, and would regularly invite me to go out with her on walks. I’d always decline.
She couldn’t understand I’m sure. We’d get together sometimes when we were pregnant, having epic pizza parties. For her, it was her second baby. For me, my first. There was so much I couldn’t tell her at the time. I felt that I couldn’t tell her or anyone else, and so I suffered in silence.
She described a baby that couldn’t stop devouring milk and was growing rapidly. Meanwhile, I would spend over an hour, frustrated, trying to get Riaan to drink just two ounces of pumped breastmilk, dealing with numerous spit ups and vomits. His pediatrician at the time - not an expert on rare diseases - had told us we needed to feed Riaan a certain amount of ounces per day, and we struggled mightily to meet that daily quota. Now I know that the amount he had Riaan drink is likely far more than what a child with Cockayne syndrome can handle.
I was worn out. On top of being a first-time mom, there were the feeding struggles and the constant worry over Riaan’s health and development. At that time, Riaan wasn’t making eye contact, and I didn’t think this was typical but the doctors kept telling me to “give it time.” I was confused, I didn’t know what was happening with my child. This was before Riaan was diagnosed with Cockayne syndrome, and even before he was diagnosed with cataracts (our first real sign that something very dangerous was afoot).
Aside from the daily feeding challenges, I was also anxious about his size. When Riaan was about six weeks-old, and the weather had turned slightly warmer, I managed to find the energy to baby-wear him using a wrap, and take him out for a walk. I was about halfway down the street before an elderly woman stopped me, her eyes wide.
“Wow. That is the smallest baby I’ve ever seen in my life.”
She looked at me accusingly or maybe it was perfectly innocent but that’s how I perceived it. I just smiled, and kept walking, unsure of what to say, tears filling my eyes. I knew Riaan was small. He had been born 5 lbs, 5 oz, and we were struggling to get him to drink milk and gain weight. I was super conscious about this, on top of all the post-labor hormones, and constantly being plagued with imposter mom syndrome. I aborted the walk, took him home, and cried. I felt overwhelmed and worried. I felt like a failure as a mom, and that I had no idea what I was doing (I didn’t).
I didn’t attempt a walk again using a baby wearer, not for a while. I stuck to strollers with a full cover.
Anyway, I didn’t tell my friend any of this. I think subconsciously I worried she’d look at Riaan, and instantly know something was wrong, and she would tell me. I also didn’t want to compare Riaan to her baby, a month younger, and already looking so much bigger than my son in pictures. At that time, I had a real, “If I can’t see it, it can’t hurt me” approach to life. I didn’t want to know. I lived in fear of doctor’s appointments. So I never accepted her invitation to walk, I didn’t talk to anyone about my anxieties about Riaan's health, and I suffered in silence until we were forced to confront the situation because of his cataracts diagnosis. Once we were told he needed emergency surgery, I realized that everything was out of my hands.
I called up my friend, sobbing, and told her everything.
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When Riaan was diagnosed with Cockayne syndrome at 15 months, I no longer wanted to suffer in silence. I wanted to share, talk, and write. I process best through writing, and I want to share Riaan with the world as much as possible. He is too wonderful and majestic to keep to myself. After his diagnosis, we were no longer comparing him to typically developing children, and demanding he eat or drink, or do the same things as other children. We still push him, we still work hard to cultivate his skills and abilities, and to keep him as healthy as possible, but we are no longer beating ourselves up if he doesn’t eat or drink as much as we think he should in a given day. I suppose there is some small relief in that.
Still, despite this liberation, the pain being so intense it freed us to speak our hearts, it’s not always easy to share everything, particularly our worries about how others may interact with him or perceive him. Sometimes the worries seem silly but other times we are reminded why we have them.
Riaan is our treasure, our gem, the jewel of our universe. I’ve always been extremely protective of him. I’m deeply conscious of the cruelties in our world, and the things people say and do, some well-intentioned, others intentionally nefarious. I know that as much as it pains many of us, children are not always spared in our cutthroat society.
Yesterday, we had one of the best days I can remember together as a family.
We are currently enjoying some time in Florida. We spent the morning spotting manatees in a lagoon, the early afternoon at a beautiful botanical gardens where a group of monks exchanged the loveliest of greetings with both of the kids along a row of bamboo trees, followed by a long and cozy nap. In the evening, we drove to a restaurant on the water, where the palm trees were dancing in the breeze, and the moon and stars were bright above us. We rode a golf cart from the parking lot to the restaurant, which was an adventure for the boys who couldn’t stop giggling. There was a live band that played wonderful Caribbean-themed songs, and both Riaan and Jivan enjoyed being there, neither one complaining at all. We had fed Riaan before we left, knowing he wouldn’t eat at the restaurant. The live band kept gushing over how adorable Riaan was when Richie and him went closer to the stage to listen and dance.
The drinks flowing, the wind blowing, Richie and I looked at each other at one point during our outing and both said some version of: “Wow, this is actually fun! We’re having fun!”
We were having an absolute blast. The weather was a tad chilly but overall comfortable. Giddy, we went home, put the kids to bed, and passed out ourselves, a smile on our faces, pleasant dreams of beaches and palm trees awaiting us.
But I mention this night because there was also a nearby diner who kept staring at Riaan, and it made me uncomfortable. She didn’t smile and her expression did not give away her thoughts. Here we go again, I thought. Why does she keep staring at him? Why is she being a wrinkle in our otherwise perfect night?
Later, as she was leaving with her group, I found out why. She was worried he was cold. She said to us on our way out to sit at their table which was closer to the heater, or to move the heater closer to ours. We were touched by her kindness and concern.
I suppose I was a bit on edge because we had a horrific incident on the flight down. The flight itself was fine, the kids both did great. It was probably our best flight experience to date. However, as we were deplaning, Riaan touched the hair of the woman seated in front of us. She quickly moved to push his hand off, and some of her long blonde hair got caught in the seat. This angered her, and she began to scream that she’d “had enough of him” meaning Riaan. She yelled that she’d been “dealing with this the whole flight” and that she “couldn’t take it anymore.”
I was aghast, my blood turned to ice while simultaneously I felt flames shooting out of my eyes. Riaan may have complained here and there but overall, he had been great. And even if he cried the whole flight, who was this woman to yell at a disabled child?
My first reaction was to apologize. I apologized to this awful woman, and I said, “I’m sorry, he’s disabled. He didn’t mean to hurt you or cause you any trouble.” But the apology wasn’t enough for her, and she continued to make comments about how she’d had enough of him. Infuriated, I told her how dare she speak to my son like that. I could feel Richie’s anger stirring beside me. Another passenger looked at us, and her, and said: “She’s horrible. Don’t even think about her. I’m so sorry.” The woman fled off the plane.
When we got off, I was still shaking with fury. I’d never felt such rage and hurt before. I remember Riaan’s face: he had been smiling at her, his usual friendly self, and then the look of absolute confusion and also fear that came across his expression. He didn’t know how to process what was happening, why this strange woman was yelling at him, at us. It broke my heart.
I forced myself to calm down but as I relayed that story to fellow CS moms later, I kept saying over and over:
“It’s almost sacrilegious to talk to our kids like that, to any kid, but especially our kids. They’re so sweet and gentle. How could anyone be that cruel? How?”
Anyhow, I’d been on higher alert since that incident. I had to remind myself that the majority of our interactions with strangers have been incredibly positive. That most people are deeply moved by, and honored to know and meet Riaan. Still, negative interactions can stay with you especially when they involve your child. I simply cannot handle barbarism toward a child, to any child, and particularly a medically fragile and vulnerable one. I also won’t let these negative experiences overcome the positive ones, which are far more profound and wondrous.
It’s an ongoing lesson learning how to navigate this world while raising a child with a severe rare disease and disabilities. But one thing I definitely won’t do anymore is suffer in silence. It’s important to talk, to share our anxieties. I’ll accept that invitation from any kind soul to go on a walk, to talk about Riaan, any moment, of any day.
Even as I struggled with feeding Riaan before I knew of his diagnosis, I have always been acutely aware that taking care of him is an honor. As I once said to a friend, I’ll happily change Riaan’s diapers for the next 50 years if that means he gets to live that long. Whatever he needs, I’ll be there. I may have messed up a bit in those early days by focusing more on the frustrations of caregiving but I’ll do what it takes to ensure he gets the best and longest life, and I’ll keep trying even if I’m not always successful. I was given the most precious gift in the universe to be his mother, and it’s a blessing I do not take for granted, as flawed as I am.
Thank you for allowing us to share our precious Riaan with you, and for supporting the work to build treatments for Cockayne syndrome.
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Jumpstart 2025 with an act of kindness! Donate to Riaan Research Initiative here. Your donation will help us continue the development of a gene therapy for Cockayne syndrome.