A Boy Turns Three
Happy Birthday, Riaan!
Today we celebrate our inspiration Riaan’s third birthday! Riaan’s mother, Jo Kaur, shares a letter she wrote to her son below. To send Riaan a written or video birthday message, please visit his Kudoboard here.
My sweetest Riaan:
There once lived a fisherman in a remote village by the sea. Every morning, he woke up, went out to sea, and caught a few fish. He then went home and played with his children; in the afternoon, he napped with his wife; and in the evenings, he spent time with friends, dancing and singing through the night. One day, he encountered a businessman. The businessman saw him reeling in a lot of big fish, and impressed, asked him how long it took him to fish.
“Oh just a short while,” the fisherman said. The businessman asked him why he didn’t stay longer at sea and catch more fish. The fisherman told him he caught just enough to feed his whole family. The businessman, who had a Ph.d., offered him a suggestion. He told him how he could spend more time at sea, catch more fish, and then buy a bigger boat, and catch even more. Eventually, he could set up his own company, his own production plant and distribution network. He could move to the big city, live like a king in a large house, and then eventually go public and float his shares in the Stock Exchange. Afterward, he could retire, wake up early, catch a few fish, play with his kids, nap with his wife, and sing and dance with his friends.
The fisherman, puzzled, said, “Well isn’t that what I’m doing now?”
(Story credit: Paulo Coelho)
Riaan, with you, your dad and I have tried so hard to live life as the fisherman does. We are not in a world where we as parents can direct our efforts toward creating an abundant, indulgent future, with dreams bigger than we dare: getting you into the best schools, saving money for your college, helping you build a meaningful and successful career, watching you start your own family and carve your own path, and breathing a sigh of relief that we set you up well when it is our turn to exit this world. Your diagnosis has robbed us of this choice: we cannot travel the path of the businessman, even if we wanted.
Given your diagnosis, we know we must enjoy and value the here and now, with what we have, and count our blessings. We cannot dare to envision the future other parents devise for their children, we are embracing our present, and holding each other close, locked in the stability of our current moment. Our riches are here, in these moments we share together, as a family, and the happiness we have, despite all of the hardships. We are the fisherman, and maybe, just maybe, we are not so unlucky after all.
Happy 3rd Birthday, darling. What a year it’s been! We took you out for your very first boat ride for your birthday. The pictures show you looking mostly content, happy to be out on the water. The truth of the matter is that you didn’t love boating: was it the motion? The swaying? Did it bother you? Was it the sun? The heat? Were you simply scared? Either way, you were extremely uncomfortable and not afraid to show it. Our boat captain looked at all of us with a mixture of empathy and pity: he saw only a child who looked quite different from other three year-olds, a child who could not sit, stand, talk, or walk, deeply upset, crying at times, and parents doing their best to comfort him, to salvage a birthday celebration, until they finally had to cut the trip short. A boat captain who noticed that look of pure sadness cross your dad’s face because he had wanted you to enjoy this experience so bad and felt terrible that you didn’t.
What he didn’t see was the joy in these moments: the joy most people miss because it can be so evasive among the tears and discomfort. This was our very first boat ride with you, and perhaps our very last one, absent interventions and treatment. In everything we do, we know it might be the only opportunity we get with you. We don’t let it go to waste: we can’t afford to sulk in the bad or sad memories, we must rise above and rejuvenate from your giggles, the laughs, the smiles, even if ephemeral, even if trapped in between tears, discomfort, and pain. In the knowing looks that you gave us on that boat, communicating that we needed to get you out of there, you being as stubborn as we are raising you to be.
The delight then, once we reached land, and the laughter, calm, and smiles that took over your being, you restored to you, once you were no longer on that damn boat. If only our boat captain had seen that side of you, the real you, the main you. The Riaan who was mesmerized by the holiday lights in a nearby neighborhood, house after house, street after street, just the night before, loving every minute. The Riaan who became a big brother this year, who is the first to comfort his little brother when he is upset, whose face bursts into delight, grinning ear to ear, whenever he gets to play with Jivan. The Riaan who has progressed so much: who has begun speaking, saying Mom, Mama, Papa, Baba, and many other sounds we never could have imagined. The Riaan who pulls himself into a seated position from the floor, every few minutes, maintaining his balance for longer periods of time. The Riaan who walks so fast on his KidWalk he is practically running. The Riaan who loves playing his version of soccer with his Nana Ji, the walls shaking with the sounds of his laughter. The Riaan who loves watching the moon rise on the beach in the evenings, the wind in his hair. The Riaan who sits and listens, calmly and intently, while his Nani Ji recites shabd kirtan. The Riaan who understands everything we say, who gives us knowing looks when his brother cries, who is a serene, wise, and fun conversationalist, who is so alert and aware, who demands interesting adventures, yet loves the security and comfort of his home. The Riaan who is full of endless energy, who wakes up every morning and greets us with the brightest, most beautiful smile, more dazzling than the birth of a star; the Riaan who is the glue who keeps this family together, who keeps his parents going, who we admire, love, and cherish more than anything, our legacy, our baby, the greatest love of our life. That Riaan. Our Riaan.
If only the boat captain knew that ours was not merely a life of sadness or suffering, even while this horrible disease continues to take its toll on your body, but stability, magic, and joy as we watch you explore and experience this - your - world. That we have built a love, a bond, a family that is very real, as tangible, vibrant, and important as the earth and the air we breathe. That we love and cherish every moment with you, and we simply cannot get enough. We laugh, we love, we live - all because of you, Riaan. You are our North Star.
It gives me great comfort to know we are celebrating your third birthday with the people who love you most, that we have surrounded you with love and laughter beyond just your dad and me.
I know you’ll continue to do amazing things, and I have hope you’ll be here for a long time. You are the strongest, funnest, most enchanting human being I have ever met. You are an old, wise soul, in the body of a three year-old, and anyone who gets to meet you and know you is truly blessed. It is an honor to be in your presence. The research that has been inspired by you is incredibly promising: the scientists are already achieving things that no one has ever done before for in terms of developing treatments for Cockayne Syndrome. We know the future is bright, and treatments are on the horizon.
And one day, we’ll go out together and maybe we’ll catch more fish. Or maybe we’ll be content where we are, dancing the night away to Elmo songs or Baby Shark. Either way, it’ll be nice to have the choice in this life. Don’t you think?
Click here to donate to Riaan Research Initiative to help us continue to develop treatments for Riaan and other children with Cockayne Syndrome.
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