In passing by the bathroom where D was showering, my niece remarks, he sure sings a lot in the shower. Yes, he does. D sings, he hums, he makes sounds and gets up in your face with a loud, fast cacophony of babbles when he is trying so hard to convey something to you. His face comes close to yours as if to say – don’t you get what I’m trying to say? Understand me.
We, his closest loved ones, know the lilt, strength, cadence, tone, melody and volume of his sounds so well. The satisfactory noises he makes when he is eating something he really likes. The song of the shower, when the water beating down on him provides just the right sensory release. The uptick of distress and desperation in his private language, when he is working himself up to a meltdown.
We hear it coming. We anticipate it. And yet still, we miss the mark too many times in understanding what he is trying to convey to us – as close as we are to him.
Bhai (brother) has a secret language, his younger sister has often remarked. Every Eid and every birthday for as long as she has been able to write, her wish list for presents, after the list of material things she is coveting at the time, includes two desires on opposite ends of the spectrum:
I wish Bhai could talk.
I wish to be able to understand Bhai.
He stands at the edge of the water, watching the waves gently creep up the sand near his toes, the foam swirling around. Usually the ocean and waves is one of his favorite things, but it’s been awhile since we’ve gone to the beach, and he’s not sure of the water right now. For the better part of an hour, he wanders around the sand, venturing towards the water at time and the quickly retreating when the water laps up against his toes.
I watch nervously, hoping his love for the water will come back. I listen for happy sounds, but he’s not making them — yet. Maybe you should hold his hand and just bring him into the water, I suggest to D’s Baba.
No, give him time. Let him do this at his own pace, my husband says.
Finally he takes a step in. I walk into the water too, out past him to where the water is knee-deep and the sand swirls beneath around my toes. Come on, D, I call to him. It’s really nice! I think you’ll like it!
He walks in, then out, holding up the edges of his swimming trunks like a young lady who doesn’t want to get her skirt wet. That’s the key, I know – get the clothes wet and then he’ll be comfortable. Half wet, half dry is a sensory no-no. Finally, as if he’s made up his mind, he strides into the water, until his shorts are underneath the waves.
There it is – the sounds of glee and excitement as he rediscovers his love of the water, waves, sun, sand and the ocean. His body becomes a conductor of joy, as he twists and dives, jumps and splashes – a whole-body expression of happiness with the sounds to match.The smile spreads wide on my face – there it is, I think. There it is.
It’s time for the biryani birthday dinner, and we’re a little late getting the food on the table. D’s two home therapists join us for dinner, and we finally serve the tasty biryani. Everyone is enjoying, but D isn’t making his usual “yummy” sounds.
He sits for 10 minutes, digging through his plate and eating pieces of meat. His breathing grows shallower and is punctuated by small yelps and grunts, the kind that indicate anxiety and unhappiness is on the rise. Soon he bolts from the table and flops on the couch, stuffing a pillow underneath his shirt.
Now he is yelling, this strange, barking-type of a yell he does over and over again. It’s a new sound, loud and persistent these past two months, causing his throat to be sore by the end of the night and our ears to ring.
His grandmother tries to feed him, but he is giving her a hard time. I know it has to be me. I take the plate from her and firmly instruct him to take in spoonfuls of biryani. He is not happy, not by any means. This is not how the 15th birthday dinner was supposed to go. He has passed the line of demarcation from hunger to anger, where he is too upset to eat or enjoy.
But, I make him eat. And between bites he jumps up from the sofa, body twisting and stomping on the floor. If whole-body joy is how his happiest moments are reflected, then whole-body anger is the result of toxic anxiety, frustration and other emotions I can’t pin down. But I need him to eat or else he won’t be able to work through this.
D’s Baba and I keep up the stream of small talk to diffuse the situation. Thankfully, his home therapists know what’s up, and they eat in silence, waiting for the storm to pass. Which it does, because once his belly is full and he works through his own anger, his smile comes creeping back.
Mo (more), he says to one of his therapists, pulling him onto the couch.
D – What do you want, his therapist asks.
Ticka ma (tickle me).
And so he tickles D, and D squirms with suppressed laughter. Are you having fun now? His therapist asks.
Yeah, he hoarsely whispers.
He is a tiny baby gingerly put into my arms, after a difficult pregnancy and a difficult illness before that. My first child. My love. My light. My wonder. I don’t know how to be a mother. I don’t know how to do this. The husband and I’ve barely been married a year, and yet here we are, thrust with the responsibility of caring for another life.
I have yet to know the impending tsunami of grief, joy, hardship, laughter, struggle and love that is rushing towards us, ready to engulf us all.
In this moment, he is not yet 15. He is my tiny baby. My heart beating outside my body. I anticipate when he will call me Mamma, not yet knowing that by his 15th birthday, that will not have happened.
But here we are, on his 15th birthday, and it’s ok that it hasn’t happened. Because without needing the words, he knows I am his Mamma just as much as I know he is my son.