by Jo Kaur, Founder, Riaan Research Initiative
As I write this, the flu is wreaking havoc on my household, and especially on my little boy. It’s Riaan’s first illness, and it’s taken a toll on his body. The fevers, the aches, the cough, the vomiting, the losing his beautiful voice. I’m in no great shape myself either. We’ve all had the flu shot but I guess there is only so much one can control.
As I held Riaan the last few nights, the fevers burning up his body, his skin like hot coals simmering in the fireplace, hearing his moans, his pains, I felt my heart break. You see, it’s not just a flu, or the awfulness of watching your child, your little baby suffer. It’s a reminder of his extremely short mortality, which can be further decreased by any severe illness - like the flu. I’m not ready for him to die, I thought. Not now, not ever. I’m just not, and I won’t be. I don’t know what that makes me. A mother, I suppose.
Intellectually, I understand he has a fatal disease. However, I’m an idealist, and a believer in miracles, and humbly believe that we will work our way to a cure, and do our best to find treatments to extend lifespan and the quality of his life, no matter what it takes.
Riaan is a strong boy. He’s not out of the woods yet but the fever has broken, the cough has decreased, his voice is mostly restored, and he’s slowly coming back to his old, charming self. I’ve heard horror stories of children with Cockayne Syndrome who are never the same after suffering from an illness - some may lose their ability to swallow, others develop different unusual symptoms. Some children may temporarily or even permanently lose skills and abilities. It’s all extremely frightening to think about. There’s an additional layer of horror that a neurological disease adds to illness, even if one survives the initial infection. When I tell this to my father, he says, stop. Don’t. Stay in chardi kala (eternal optimism). Learn from your son.
He’s right. Life is so precarious and fragile, for any of us. In Riaan, I see not just strength but a peace, a bliss, a kind of joy that exists regardless of his present situation. I learn so much from my boy. He’s much wiser and greater than anyone I’ve ever known. He brings love and life to anyone who has the honor of knowing him. I remind myself to live now, to live in the present. Enjoy the moments. Despite the aches, pains, stress, and worries that ravage one’s body and mind. Despite the weariness, despite the despair. Try to rise above, and feel in that present moment, the infinite power of hope, and possibility.
It’s easier to say these things when you’re swinging high. The other afternoon, as I vomited profusely into the toilet, feeling worse than ever, my phone rang. It was the doctor’s office. I let it go to voicemail. It rang again. It must be important, I thought. So I muster all of my strength - mid vomit - and answer. “Good news! We have the results of your blood test,” the lady on the other end sang. Blood test? What are you talking about? Then I remembered. A test I had done a few weeks ago, and completely forgotten about. Great, thanks. She seemed extremely puzzled by my lack of enthusiastic response but there is only so much excitement one can muster while vomiting. I ended the call and wiped away the tears resulting from dry heaving for minutes into a toilet. I couldn’t stop vomiting despite having nothing left in my belly, the despair of my then current reality settling in all around me.
Last Saturday night, before the influenza hit, I was lost to the grips of insomnia. To distract myself, I searched my bookshelf and came across a young adult book I had read as a teen. It was about a group of teens living in a beautiful hospice on the cliffs in Washington state. All dying, all young, they gathered at midnight, and shared wonderful stories with one another, some full of horror and action, others full of love and eternity. As they connected with one another through storytelling, they realized that despite how short each of their lives were, the time they had on this planet had been impactful, in their own way, and they had spread the cause of love and peace. It’s all that mattered. I sobbed throughout the novel, and of course thought of my Riaan, who in his two years, has already changed the world and then some in my opinion. May you get better soon, my love. You have so much work left to do.
The #Run4Riaan Campaign
Riaan’s dad, who was the first to contract the flu, but has recovered is working hard for his half-marathon on May 1, 2022 to raise awareness and funds for Cockayne Syndrome. Please support his run, and our journey to work toward a cure by making a donation today: riaanresearch.org/donate (#Run4Riaan).
Wishing you all good health and happiness. Thank you!