Huge thanks to Tarsha for sharing this lovely letter that she wrote to her youngest son. He has albinism, is legally blind with esotropia and nystagmus. As she said, “Sometimes I think it’s harder on us than them.” – Ann Z
My Dear Sweet JoJo (or Joseph as you prefer these days),
Our days are swirling by in a whirlwind of chuggington, chicken nuggets, playdates with Cub Cadets, and afternoons of Uno and Candyland. I find myself longing to spend every possible moment with you and your brother. You started coming into our room at night to sleep in our bed. We sent you back to your room at first. Then it dawned on me, the days of your cheek hugs and tight, around the neck squeezes are limited. It breaks my heart to even think of the day when I can no longer cuddle you nose to nose, forehead to forehead, your chubby little hands holding mine. So right now, you sleep in our bed most nights, sleepovers I will cherish for the rest of my life.
Today, a picture of you at the circus of the senses was on the cover of the metro section of The Boston Globe. Our friends and family have been calling and sending messages all day long. Our adoring neighbors, Pat and Jim, brought the paper over so you could have your own copy.
I need you to understand how magical you are. From the moment you arrived, you have spread joy everywhere you go. When we make trips to Market Basket, the post office, to get gas, or even to a doctor’s appointment, you greet everyone we meet with your wonderful smile and a pleasant question. “Hello, how are you? What’s your name? ” For a very long time when you were three, you engaged everyone with, “what kind of car do you drive?” What is so magical about this you ask? The answer is your interaction with others, your jolly personality, your raspy little voice, your gigantic cheeks and most scrumptious dimple ever, your round glasses, the way you use your hands when you talk or casually cross your legs, your inquisitive way of questioning everyone and everything.
All of you, Joseph, this is the magic.
You stop people in their tracks as you confidently take on everything this world has to offer. You do not shy away from experiences. Can’t see? So what. Riddled with anxiety? So what! Headache from the sun? So what. Sensory dysfunction screwing with you? So what! You have this grit, this determination to learn, to do things on your own. We are all in awe of you.
You’re interested in things the doctors said you wouldn’t be able to do. You don’t know what the doctors said. We never told you. Sports, you love sports, basketball, soccer, hockey, gymnastics, all of it. I know it is scary for you at times. I know because I am your Mom, I know because of the way you chew your nails, and because of the way you worry. Scary or not, you forge ahead, unwilling to let anything get in your way.
Joseph, you amaze me. I couldn’t be more proud of your spirit. You started reading and writing when you were just over two years old. It isn’t easy for you. You use glasses, magnifiers, ipads, and anything that will help you. When you get stuck you will not move on until you figure it out. You are stubborn! Thank God!
At first when Daddy and I saw your picture with the cane we felt sad, thinking, “Poor Joe”. Then you came home, bursting with excitement, laughter, and information about your day in the city, on the subway, and meeting all the animals. YOU did not feel sad about the cane. Not one bit.
In those moments I learned so much from you. Life is not about the struggles or stresses we encounter, but rather about the way people use them as either a crutch or as motivation. It was then that I realized that you do not let anything get in your way, you choose to be motivated. You choose to be happy. It was then that I sat down to write you this letter. So that, when you are older you can read about your magical four year old self.
You say things like, “I’m a lucky duck!” and you mean it. Joseph, I am the lucky duck, because I get to be your Mommy!