Last night my kids and I sat on the living room floor, bent over colouring books, singing to ’80s music playing on the radio. Well, I was singing. They were asking me if various singers were dead yet, because clearly anyone alive in the ’80s must be so old now that they are practically knocking on death’s door.
My kids were colouring trucks and penguins; I was colouring a monkey. For most this would be unremarkable, but for me it was wonderful. This was the first time I’d ever been able to draw in a colouring book with my kids. As I’m a mum who is blind, typical colouring books don’t work so well for me. I can draw on paper, but my drawing capability is somewhere on the spectrum below Scribbling Toddler. I like to blame my horrible drawing on the blindness but it could very well be an abominable lack of talent. This past weekend, my mum gave us a tactile colouring book, and the outlines of the pictures are marked with raised dots. Using these tactile pages, I was able to join my sons in their play. They were so delighted that they went for nearly an hour without a single sibling bicker. They kept coming to examine my work and sprinkle me with kisses. “Wow, Mum! That monkey looks great with a purple tail! Who is that guy singing now? Is he dead?” In spite of my children reminding me how ancient I am, little moments like this bring me such great joy.
Of course, not all moments are this lovely. For a parent who is blind, there are days and sometimes entire developmental phases that are frustrating. Learning to spoon-feed my first baby was super challenging. This can be a difficult and messy venture for anyone; adding blindness to the mix multiplies the difficult and messy factors by about a thousand. My son loved to turn his head just as the spoon came his way, so I confidently aimed the smashed carrots right into his ear. As a first-time parent, I wanted to do everything perfectly. I changed up the spoon, bib, baby seat, with minimal success. By the time my second child was ready for solid foods, I decided to forego the utensils and let him learn to eat with his hands. We never looked back.
When my children were mobile but not yet verbal, one of the most frustrating parts was the classic whine-and-point manoeuvre. “Mum, I want that thing over there but I don’t know how to say it, so I’m going to whine and point at it until you give it to me! Oh, you can’t see what I’m pointing at? Well, then I’ll just keep pointing and scream louder, okay?” One time my fourteen-month-old made me so crazy with this manoeuvre that I locked myself in the bathroom to take a few deep breaths and sneak-eat a chocolate bar.
The biggest challenge has been transportation. The inconvenience of lugging two car seats around, coupled with anxiety about not wanting to lose my children in a crowd, has kept me from going places with my children more than I like to admit. Now that they have grown a bit, it is starting to get easier because we can talk about safety and the rules of sticking together. We have also learnt to turn outings into play dates with friends, which makes a trip to the playground more fun and less anxiety-provoking for me.
Most of the challenges are navigable when I learn to let go of perfection, ask for help or, sometimes, develop superhuman hearing skills so I can catch my kids in the act before they do something dangerous or sneaky.
Sometimes there are things I cannot change. Sometimes there are moments of heartache. I feel it with books. We have loads of braille books at home but braille selections are still limited. I stroke the smooth pages of printed storybooks, longing to read them all to my children. I feel the heartache when I dream of witnessing joy on my children’s faces, laughter in their eyes, fascination, curiosity, mischievous grins.
I have learnt how to hear smiles in their voices and feel them in their cheeks. I touch their faces often and have been doing it since they were newborns. I brush my hand across their faces to remember the softness of their eyelids or shapes of their noses. I tickle their smiling cheeks when they are full of giggles. They are still little enough to let me do this. I doubt it will fly when they are thirteen and full of teenage angst. I will take it while I can. It is a way for me to share in their joy.
Joy is something we share easily together. When the kids and I go for walks, we listen for bird calls, run our fingers along the bark of the trees we pass. Sometimes my sons will yell to me to “come quickly!” just so they can tell me about the colours of the sunset. We find joy by paying attention to the beautiful things, by sharing them with one another.
Most people I have encountered in life don’t know quite how to deal with blindness. A passer-by once asked me, “How do you make it through life?” I wish I said that I do it by learning to laugh about remarks like hers. Sometimes I am the object of people’s pity, sometimes of their fear, sometimes of their utter amazement that I “do so well!” or “don’t even act blind!”. Most people I meet see my blindness and never actually see me.
The beautiful thing is that it is never like that with my children. I am just their mum. I am the one whose name they yell eight million times while I’m trying to have a three-minute phone conversation; the one they argue with about why I won’t let them wear pyjamas to school; the one they cry with and sing with and crawl into bed with at 2am when they have a bad dream. My blindness is natural for them. They tease me when I bump into things, and I love it. When I ask them about the colour of a shirt, they sometimes answer and other times ignore me completely. The beauty is in the normalcy of it all. The joy comes in the plain old everyday—the horrible knock-knock jokes we tell at dinner, the pig piles, the impromptu dance parties, the popsicles and sidewalk chalk on summer afternoons. The joy is in the living and in the loving of these children with every single bone in my body. The blindness is just one component of our lives that adds messiness and struggle and light. Sometimes it is in the background and sometimes in the foreground, but when we can all sit on the living room floor and colour together, even when I’m the only one singing to Bruce Springsteen (who is not dead, thank you very much!), those moments are pretty close to perfect.