Happy Birthday, Riaan!
A Letter of Love From a Mother to Her Son
by Jo Kaur, Founder and Chair of Riaan Research Initiative
To send Riaan a written or video birthday message, please visit his Kudoboard. Video messages, in particular, would be awesome! Kudoboard makes it easy for Riaan to hold on to your special message for a lifetime.
My sweet Riaan:
When your dad and I were engaged to be married, our save-the-date cards carried a famous quote, from a very well-known book.
“And, when you want something, all the universe conspires in helping you to achieve it.” - Paulo Coelho, The Alchemist
At the time, we thought the message applied to our upcoming marriage but truly it was about you. Your birth into this beautiful, surreal world, and our journey, unbeknownst to us at that time, to try and save your life, a desire, a need, a mandate that burns deeply within us, more than anything in our known universe.
Today, my dear Riaan, is your second birthday. Two years you’ve been on this planet, beautiful boy, and what a delight you are. Do you know how much joy you’ve brought us?
You were born on a snowy winter’s night, after 27 hours of labor, shortly before the start of a global pandemic. I had a fever, I was hot and shaking, and the epidural had only recently started to work. The doctors were certain you would take your sweet time but shortly after 3:20 am, I knew that there was no holding you back. You were ready to live, in our world. Panicked, I realized I was alone in the labor and delivery room. What if you just slipped out and fell on the floor? Should I scream for help? Fortunately your grandma came in right at that moment and I screamed that you were coming, and off she ran to get the doctors. Suddenly a whole team of doctors and nurses, and your dad came in, and all I heard was “Push! Push!” They were amazing, these people. Riaan, I felt like I was a gold medalist on an Olympic rowing team, and they were my biggest fans, cheering me on.
I had feared the delivery part was going to be so hard, my contractions had been really painful, but it turned out to be so easy. You took it easy on me, kid. Out you came, quick as could be, and we all heard the cry that we had been waiting for.
At last. 3:33 am EST, our little king was born.
I looked down, so eager and anxious to finally meet you. After all these months of seeing you on the ultrasound, laughing at your big nose - no offense, honey, but you would always smush your nose against my uterus, and it looked enormous. But after you were born, and I looked at your crying face, your body still covered in a little blood and birth goo (for lack of a better word), I have to say you took my breath away. You were absolutely and completely perfect. Your features, adorable, and all the right size. The most beautiful baby I had ever seen in my life. I heard the doctors discuss your Agpar score, I asked what it was. They said a 9. I smiled, relieved. “He’s ok,” I thought. “He’s healthy and ok! It’s all going to be ok.” Then they handed you to me, and I got to hold you for the first time in all of existence, both mine and yours.
Riaan, I was so nervous in that moment, if I’m being fully honest. You see, I wasn’t used to holding babies, and I was so scared I’d drop you or do something wrong. I asked the doctors how to hold you, and they told me. I held you warmly against my chest, looked down at that face that would change my life forever, that would teach me a love I never knew existed, and felt so elated I could cry. My first words to you were, “Hello Riaan. Welcome to the world.” You wouldn’t stop crying. I then said a short prayer. I promised in that moment to protect you always, no matter what. The dangers in our world are many, and I would do my job to keep you safe. This I swore to you.
Because I had a fever during labor, they were worried you might have an infection so they took you to NICU for a few hours. Before that though, your dad got to hold you, and you wouldn’t stop staring straight into his eyes. We were able to capture that moment on camera.
December 12th, I thought. What a good day to be born. 12/12. Easy to remember, and it sounds so fancy. While you were in NICU, your dad got me the turkey sandwich from the hospital cafe that I had been denied my entire pregnancy. I’m not going to lie, Riaan, I missed you, but that turkey sandwich was so good. Your dad went to NICU to see how you were doing, and took some photos to send to me. We began missing you really badly but we were also exhausted. In those moments alone though, we realized we never wanted to be apart from you again. They moved us to a recovery room, and then we fell asleep for a few hours before we were reunited with you again. We fed you and held you and kissed you, and fell asleep together as a family, excited for a new future together, so happy to have you in our lives, so thrilled for you to be our child, visions of you running around and growing up, a life full of laughter, love, and learning, all playing in our minds.
It’s now two years later, Riaan, and our family’s journey has taken an abrupt turn. Many parents are starting to looking up pre-schools for their children. Instead your dad and I are trying to find palliative care doctors. As your mother, I’m completely devastated. I am so sorry you have to go through this. I’m so sorry, Riaan. It’s unfair, it’s cruel, and it’s not right.
Riaan, we’re all struggling to understand and accept what’s happening, how all of this could have happened to you. Scientifically, we understand how. But as parents, we will never get why. We will never accept this. It’s too painful, and we will fight. We are fighting. I don’t want you to be scared. We are with you every step of the way. Riaan, there are so many people all over the world who are with you, who are rooting for you, who care about you, who are inspired by you, who love you as much as we do, who are donating, who are making it possible for us to get treatments developed. There is hope, my love. I know, it’s a lot to deal with in your little life. But we’re going to fight this, and you’re never going to be alone. You’re always going to be surrounded by love, hope, and fun. And your dad and I will continue to do everything in our power to protect you from harm. This I promise you.
I am not sure what you know about your diagnosis. You seem like a very happy and bright little boy and I suspect you understand more than any of us think or know. I know sometimes you try to communicate with me, and you can’t, and it’s frustrating for you. Like when I grab books you don’t like, and you lunge for the entire book box to try to find something else to read. Even if you don’t have a great strategy for what to do when you get there, you always go for it! You’re a very decisive boy, and that’s one of the things I love about you the most.
Your dad and I know you work very hard at the things a lot of other kids take for granted, that your diagnosis makes very challenging for you. We know eating is hard for you. We see how you look at our plates of food, but when we offer you the food, you are unable to eat it. We know when eating is too much, you try to evade us by rubbing your eyes (clever boy), or by shaking your head, or frantically trying to change the song on the phone. We know sitting is hard for you. We know your head can feel heavy at times. We know you can sit for longer periods if we read to you but otherwise, it can be tough. Still, you try. We know standing and walking are activities you enjoy doing on your Kidwalker. We know you struggle to keep your feet flat on the ground, and often turn them inward. Still, you keep moving your legs, one foot in front of another.
We know these things, and we see how you try to overcome these challenges. Every day. You want to eat well. You want to sit. You want to stand. You want to walk. You want to talk. Oh you try! You open your mouth, you make so many sounds. You put your hands to my mouth all the time while I sound out words to you. You try so hard to repeat what I say. You blow bubbles, you make sounds, you try to open your mouth like I do, you try to imitate me, but the sound you want to come out does not. The other day you managed anyway, you said “Yup”! So clearly, so loudly, so proudly. And you smiled so big after you said it. You knew what you had done, and you were happy.
You get bored of your toys, you hate lying around all day, you try so hard to sit up on your own but manage to only get your head up. You’ve quickly recognized what your body is able to do at a moment and its limitations, and you’ve found workarounds. You’ve perfected your spinning technique, you can kick and manipulate a ball with your hands and feet better than most athletes I know. Riaan, you are so smart, honey. So smart.
Sometimes you cry and we don’t know why. It makes us sad, we don’t know what to do. You’re usually so happy, so delightful, so interactive, so alert. But sometimes, it seems like something is bothering you. Are you in pain? Does something hurt? I wish I knew what you were feeling. I wish I could take this disease from you, every part of it, and put it in myself. I wish you didn’t have to go through this. I wish I could go through this for you. I wish I could be your shield. It’s a mother’s job to be her children’s shield, to protect them.
Riaan, you’re my closest confidante, my best friend, my partner in crime, my hero, and you amaze me every day. When we lock eyes, and you smile that precious smile. The way you cuddle so close to me during naptime. Every time you rapidly turn toward the door to see who is entering or leaving the house. The way you always grab your Aunt Minou’s necklace, and how you know she is the only one around you who wears one. The way you always pull off my glasses, smiling as you do so. The way playing ball, dropping your toys, or the sound of the blender makes you squeal with delight. How excited you get whenever you get to party on a hotel bed. The way you smile when your Nani Ji recites the Mool Mantar to you on video chat. The way you laugh whenever your Nana Ji sings “Happy Birthday” to you, which he does almost every day. I know, it’s a little confusing because now that it’s your actual birthday, you already know the song well and don’t know what’s so different about today.
Riaan, I want you to know that you’re perfect. You’re absolutely perfect. You are very much the child we want. Your diagnosis does not define you. You are Riaan, and Riaan is an incredible, wise, and brilliant soul, and we are all so lucky to know you. You have inspired an entire organization, honey. Because of you, people are donating money to help raise funds to develop a treatment for this horrible disease. You are showing us hope, and possibility. You are opening the door for so many families, so many other children. You are full of love, chardi kala (eternal optimism), and joy. You are our light. You belong to not just us, but the world.
Do you know how many times people have wanted to say no to me when I made an ask but then they saw your picture, and were instantly moved? You’re a legend, kid.
I love you, Riaan. I can’t imagine the world without you and the magic that you generate. I don’t want to think of such a world, it would be too unbearable. And there is nothing that your dad and I want more than for you to be well, and to take care of us in our old age.
Will the universe conspire with us and help save your life? I have so much hope. You stay healthy, beautiful, and strong, baby boy. And live your best life. The world is yours.
Whenever you need me, I’ll be there for you. Always, and forever.
Happy Birthday, beautiful Riaan. And here’s to many, many more.
With all of my love,
Mama
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Today is the last day to donate to Riaan’s birthday matching fund! All donations - no exceptions - will be matched if made by the end of December 12th. #Match4Riaan
To donate: https://www.classy.org/campaign/riaan-birthday-match-campaign/c369158