Precious Pre-School

A journey of wonder, a journey we never thought we'd take

by Jo Kaur, Founder, Riaan Research Initiative

(May 2, 2023) - A huge thanks to everyone who attended Riaan Research Initiative’s April webinar on our Cockayne syndrome drug repurposing program with Leiden University Medical Center and Charles River Laboratories, and to our hosts Martijn Luijsterburg and Paula van der Meer for their excellent presentation! It was a successful event, and we had a nice mixture of attendees consisting of CS families and researchers from around the world. One family even informed us that they stayed up until 1:00 am their time to join our webinar - thank you!

On a personal note, it’s been an incredibly busy couple of months now that pre-school has been added to our routine. After much trepidation, Riaan began pre-school in early March. He is in a class with nine other students with disabilities. He has his own one-on-one health paraprofessional, and receives a variety of therapy services. My emails to the school staff regarding Cockayne syndrome and Riaan’s needs could probably fit into a small book (I am happy to share any of these with fellow CS families). As rare disease parents, we’re constantly advocating for our children, and unfortunately know the disease better than most.

Riaan, on his walker at pre-school

Riaan’s first couple of days were pretty awful by anyone’s standards. We’ve been starting him out slow. He attends for only a few hours a day, a few days a week. Less than three weeks into it, he stopped crying at drop-offs, although he still gets a little emotional at pick-up because he’s very excited to see his mother (clearly!). The other day, while we were waiting out front for his aide to take him to the classroom, Riaan was gesturing toward the school doors and smiling. He was so eager to go in!

When Riaan first began school, I would drive back to a house without him and feel so empty and sad. Our home felt unnatural, unsettling - the walls were not used to life without Riaan and his howls of laughter. In his three years of life so far, Riaan has almost always been home and if he was out, he was out with us. To be at home without him felt so strange. I missed him so much. I know that fellow grieving parents will understand this. I would let my mind travel to thoughts about what it would be like if he was never coming back? If that day were to come. And then I’d feel a rush of relief because that day wasn’t here, he was just in school, and he would be coming home soon. If it wasn’t for Riaan’s joyful and adorable little brother, I would probably just have sunk into the couch those early days, lost to the grief.

Whenever it’s time to pick Riaan up, I can’t get there fast enough. Except the speed limit is 25 mph here on most roads on the way to his school (which is ridiculous!), and while that’s fine when you’re in a busy area with heavy pedestrian traffic or vehicles, it feels silly on empty roads in the middle of the day when you’re desperately trying to get to your son. I can’t describe the excitement I feel every time I see his little face when they bring him up front; him immediately reaching for me and wrapping his arms around my neck in a tight hug. My precious, beautiful boy. One day they wheeled him up front in his adaptive chair, holding his lunchbox in his hands. There are no words to describe how adorable he looked: I was simply gushing.

How was your day, Riaan, I always ask. He usually gives me the biggest smile. I’ll take it.

How has pre-school been going? Well all of the usual fears about illness remain but any concern about Riaan fitting in or enjoying it have gone out the window. I’m not there with him but from what his teachers tell me, and from the pictures and videos they post, it seems like he’s truly having a good time! I can never match the variety of activities they offer him, we simply don’t have that option (or energy) at home. He uses a gait trainer when he goes on walks with his class, and can make it a few blocks before he gets tired. That is a lot, in my opinion. It’s no wonder Riaan is my hero. He sits on adaptive chairs in the classroom, he rolls around on a mat, and he uses a stander. I’ve seen photos and videos of Riaan in a stander, smiling and clapping along to a happy birthday song to a classmate, about to whack the pinata. I’ve seen Riaan accept gifts from another classmate, I’ve seen him smiling and laughing and engaging in art projects. In fact, he’s brought home several Frida Kahlo level projects that have already been hung on the refrigerator. Indeed, he’s even allowed his teacher to feed him his snack and drinks. These are all big steps!

Riaan at pre-school

I have to step back and allow a gracious, “I told you so” from a fellow CS mom who had shared this precise insight (I didn’t truly believe her at the time). Yes, it may be hard at first but his world will open up and he will love it. He’ll make friends, he’ll do things you never thought possible. You’ll see.

And boy was she right. I’m so happy he’s getting this opportunity.

Not every day is roses, of course. He has some rough moments, he still cries at times at school but overall, he seems to be doing much better than I expected. I was worried he’d be miserable, he’d cry all the time, and if that was the case, it wouldn’t be worth it. Even though we’d potentially lose access to his therapies, like physical and occupational therapy, and speech. But our children are capable of so much more than we can imagine.

That being said, while Riaan has abundant energy, he also has a devastating disease and requires much more rest than a typical child his age. Riaan is always a ball of energy and I will be the first to admit that even he doesn’t know his limits. He’ll play all day if you let him. However, he needs rest, and sometimes too many hours at school, too many therapy sessions cause him to be over-fatigued, which negatively impacts his eating and drinking, and worsens his vomiting. On those days I keep him home for a day or two because he needs to heal and recover.

This is partly where situations of families like ours differs from traditional thinking regarding children with disabilities. Our goal is not for him to “progress” in the usual sense. We want to maintain the status quo - a stable baseline - as long as possible. If he progresses in his abilities, that’s wonderful but we do not want to push him too hard. The most important thing is that he have fun. Pre-school should be fun and interactive for him, he should be laughing and giggling throughout, and forming friendships with others.

I’m also now over six months postpartum, and life with two children is incredibly busy. Riaan and Jivan (Jivan’s name rhymes with Steven for easy reference) are the world’s most loving brothers. These two are absolutely and madly in love with each other. If I had any doubts about going through a second, incredibly tough pregnancy, well it was all worth it, and then some. Jivan on his own brings our family so much joy but watching him and Riaan interact, and the love they have, it’s the most beautiful and precious thing I’ve ever seen. It fills my heart with equal parts love and heartbreak.

The first thing Riaan does when he comes home from school, after bathing, getting a world-class mommy massage for his tired muscles, and eating, is wrapping his arms around his little brother, hugging him tight, and offering him protection that only a big brother can. The smiles on both of their faces when they see each other. The two canoodle like little lion cubs, nosing and even licking each other. Jivan will bury his nose in Riaan’s armpit and pull his hair; Riaan will giggle and let him. I’m there to intervene if things get too rowdy. They’re so cute your brain may explode just by the mere thought of it.

We sit them both next to each other in their chairs, and let them chat. They smile and giggle at each other when out on walks at their favorite parks. Riaan likes to watch his brother eat. And our favorite: reading club. Riaan usually gets kicked out of reading club at some point for being too contrarian: he gets bored of a book and wants another book in the middle of our reading even though his brother is mesmerized. He’ll pull the book away from his brother so he can turn the page. But sometimes Jivan and I feel bad, and let him back in, with promises of good behavior. He rarely complies.

On the ride to and from preschool, the boys chat with each other in the back. I play “If you’re happy and you know it, clap your hands” and while I sing, Riaan giggles and claps his hands.

Riaan with his brother, Jivan, and at the park

These are the moments I want to live in. I’m in them. This time with my children is everything a mom could ask for.

I’m truly grateful for Riaan’s pre-school team for helping make these magical moments possible for our family. We will cherish these memories forever.

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If you missed our April drug repurposing webinar and would like a recording, please email us at info@riaanresearch.org. This work to get treatments developed so that Riaan and other children can stay in school is only made possible by the generosity of donors and supporters like you. You give families like ours the ability to dare to dream beyond what we ever could have imagined.

Head on over to riaanresearch.org, and make a donation today. We still need your support, more than ever. Thank you!