We emerged onto FDR from the traffic snarl of First Avenue. I looked out at the sunshine dancing, glinting on the river across to the Brooklyn shoreline and let out a sigh of relief to finally be out of the doctor’s office. I relaxed into the moment. Nael had dozed off into an exhausted sleep. I looked down at him and my eyes welled up with tears. The first, unbidden thought in my mind was, how will he ever know this magical play of light on water, this letting go? I wrote a year ago about my blind son. People in the initial days of the LCA diagnosis told me that it will get easier and he will have a full life. That is partly true. I believe he will have a full life. However, I don’t know if it gets easier. I believe that one gets better at pragmatic thinking when confronted with challenges, hurdles that should be mundane, everyday tasks. And better at controlling and concealing emotions from others. Basically, it gets manageable. But, at that moment, my gut reaction was to deny wonderment. I was consumed with a sense of guilt and loss.
Another moment etched in memory is from a year later. I was at Pearl Paints art store on Canal Street. It was closing doors forever, after being such a steady presence for students and artists. I believe it was the last day. The place was in disarray. The elevator was either not working or being used for something other than foot traffic. I had to use the stairwell. It was dark, precarious, steely. I carefully started down, marveling at the otherworldly experience, descending the backbone of this dying giant, no one else intruding in on this moment, when I thought of my blind child. He will never experience this. Not because it won’t be there when he is of age or he won’t have the imagination but because he won’t want to. He may understand the significance of it but the idea of actually navigating the grates, alone in the dim light will kill any other desire. It would scare him. And it hit me like a brick. What does it mean to me if it means nothing or something entirely different to my child?
One morning, I woke up with overwhelming gratitude in my heart. The next day he was home from preschool. It was snowing outside. We spent the day playing his unique games. He made me yell at the balls that he would throw for being naughty and hitting things. By the afternoon, I was exhausted. I started doing chores, he played the piano. He asked me to turn on NY1 to hear the news. Still restless. I agreed to play more. We went to a different room. He said, Mama, keep talking, don’t stop. Later he was laying around. I said Nael do you want to hear about Mama’s day while you were at school yesterday? He immediately perked up. I have always known it but it struck me yet again as to how great a need he has for interaction and the spoken word. Conversation, news, weather, stories. At his age and in his sensory world, the need to understand and enjoy comes, for the large part, from the words of another. It makes me sad, sad because of the potential that is lurking, shimmering below the surface. There is so much more than can be added to his world and his desire and ability to appreciate is so great. I feel that I tapped into something spiritual that day. A nagging need to persevere and never give up wanting more for him.
Soon after, I started formulating the talk I would like to have with him when he is little older. ‘Nael, I want you to know that you are missing something in life, the most dominant sense around which our whole world is arranged. The sense that will always give the other person more information and so, more power than you. I also want you to know that you have been blessed with every other thing that anyone could desire. You can let this lack of an ability bring you down or rise up because of it. The fact that you don’t fit the mold of a ‘regular’ child, frees you up and opens up so many trajectories. You actually can be whoever you want. It free us up as parents also! Free from comparison or a need to compete. I want both you and Natasha to know a secret to happiness that I learned from my grandmother. A sense of humor about yourself and the world you live in. A sense of whimsy. You have to have integrity but also take yourself with a pinch of salt. What if you fall? Or trip? It is funny. I know you find it funny right now. Laugh as you always do, get up and carry on. What if someone intrudes in your personal space? Let them know with a smile, detach and move on. You will run into things and knock them over. The number of times I have done that coming into a dark room! The thing to remember is that it will happen and is of no consequence. It is normal. You don’t need to feel bad. Just brush it off. Some people may get irritated. Don’t let their reaction affect you because reactions are impulsive and most people don’t or can’t temper them with a lot of thought. Another’s opinion or treatment of you doesn’t define you. You define you. Just stay on course and remember that your true power is within.’
Nael is now a personable, friendly child, full of pleases, thank yous and excuse mes. He greets everyone loudly and approaches children with a hug and a pat on the head. Most kids are reticent and averse to touch, of course. He will say hello to strangers on the train, knows the schedule backward and will give unsolicited directions if he hears any uncertainty. On the ride, he will talk to me till I tire and start reading a book. Refusing to accept the silence, he will keep chattering away and when told to quieten down, will ask, ok but can I keep talking? Sheepishly, I say yes and feel others glance at me. And, of course, he loves the subway. Will ask to sit on the platform and listen to the ebb and flow of trains, chitchat, announcements for hours if he is allowed. I have always rather walked than taken the subway but have had to get over that fast. He also loves to laugh, laugh at people sneezing, blowing their nose, any unexpected physical sound and blesses them freely. One directive from him, ‘Mama, are you happy? Be happy!’ undoes many a tough parenting moments.
Now that he is out of the stroller and using his cane actively, people’s reactions are very interesting. A lot of stares and smiles, some encouraging, some commiserating. There is some fear and a clearing of paths, which always makes me laugh. A number of blessings and some, for lack of a better word, intolerances. Other times, reactions that leave me puzzled. The other day, on the F train, we got a seat next to a group of people. They looked to be from out of town. On glancing over, I noticed that an old man in the group had tears streaming down his face. I averted my gaze to give him privacy but he made an effort to catch my eye, looked deep and said, I am crying for him. Not sure how to react, I looked away with a smile. I tried to understand what is it about my happy child that makes someone so sad. Is it the assumption of a less than wholesome life? If so, it is true that the world is not designed for him but his world is full of emotion and experiences. Or is it the feeling that he will never know the world as we know it? If so, it points to a laziness of perspective. There are so many other ways to experience this beautiful, crazy world of ours than just one person’s view. Maybe the sight of my blind child is a catharsis for one’s own troubles. It is not easy to see a child with a disability. Their vulnerability and dependency can be heart-rending. Before I met my child, I was guilty of looking away rather than confronting my troubled thoughts about someone who was differently abled. I knew that this other, tremulous and tender world existed but I preferred to take the easy way out. So I do understand when others do it or can’t understand it. And doesn’t our perception of their reality, on some level, makes us feel blessed in our lives? And, isn’t their ability to generate this gratitude, a gift, and blessing in itself?
Another time, in a conversation about children, I heard it be said that Nael will be Natasha’s burden. That remark left me unsettled. He is an intelligent and talented boy with a strong streak of independence. Why would he be perceived like that? And I would have characterized the two of them in a million ways but never as such. I would have thought of them as closest of friends and confidants. I would have imagined Natasha’s tenderness for him and vice versa as I know of their capacity for love. I would have thought of them remembering their shared childhood and laughing at the kookiness of their parents. But never that. He is crazy about her, asks about her first thing in the morning and only, voluntarily kisses her. She is overflowing with love. And the thing about love is that when you are born surrounded by it, you take it and happiness as your birthright. I have never doubted that I can or am worthy of love in any fiber of my being. And I only feel like way because I came into this world to the unconditional, absolute and unselfish love of my family. That shaped my life and it will do so theirs. Love will be their bond, not a burden.
I often wonder had we known how our lives with children would turn out, would we have made the same decisions? Our situation is not typical. Zain’s older brother has special needs and he has seen the challenges that come with it. I believe we would have been more apprehensive and considered it a lot but the decision would have been the same. The same because with perfect knowledge, we would also have known where our true strength would lie, it would be with a boy navigating a bad design with the stealth and fortitude of a superhero and a girl suffused with love and personality who just wants to melt into you. If there ever were to be a Nael and a Natasha in this world and they had to have the exact same gifts and abilities that they do, there could be no other way but for them to be ours.
In searching for children’s stories that Nael could relate to, I came across a beautiful tale called Mole’s Sunrise. The blind Mole has heard a lot about the sunrise. One day, at dawn’s break, his friend Vole takes him to the lakeside.There with the help of his other friends Squirrel, Robin and Sparrow, Vole describes sun on water in the most imaginative and vivid manner using all the other senses. Mole is delighted and overwhelmed with a sense of awe. My denial of beauty in the early days has evolved into an exercise in joy and creativity. Nael will have a different way of finding his muse, his world. I have to help him bridge that gap. If I suppress what is wondrous within me, how can I ever teach him to love adventure? And my job as a mother is to ensure that both my children grow up inspired. That they feel magic and their hearts expand when they think of how they are loved.
The world is rich with beauty borne in unlikely places. On the subway platform, in a blind camp, in an elevator, in playing with earth and sticks and stones. In the desperate creativity of translating a visual world into a tactile, auditory, olfactory, gustatory wonder. In the frustration of endlessly sleepless nights, nights when sleep is sticky, touching the rim of the eyes, corners of the mouth, palpable to the tongue, in the fingers and toes but impossible to get. Sure I am tired as hell, like a mother of any young child. I am not as groomed as I would like most of the time. I wouldn’t say I don’t care what people think which accounts for why I am the rest of the time. I still care but my attention has shifted from the surface to something that is deeper and more nuanced. And I am happy, happy to be saturated and fulfilled by the growth I see every day in both my children.
And, in this multi-layered and textured experience, there are still moments, when a well-wisher sends me a doctor reference or a cab driver says a prayer or I read an inspiring article and the gates crack open. What I have relegated to the back of my consciousness starts to seem hopeful again. Tearing up in an uberpool as I reach over to kiss him and feel him become self-conscious as we are sharing it with a female companion. I find myself day-dreaming of what could be because there can be so much else. It is as if there may be a hint of a clearing in the clouds. Even then, in those make-believe moments, there is always disquiet. The fear that if I surrender to the expanse opening above, I may not notice the earth give way beneath my feet.