A life no less wonderful

Image by Lakeisha Bennet on Unsplash

A life no less wonderful

When I find my voice, I call her to my side and show her what I found, what she may have known already, but did not have the words to tell me.

“Sweetie, look,” I say, “You’ve started your period. You’ve grown up.”

She looks at me and laughs, with what I think is surprise, and her usual mischief. I smile back and show her what she needs to do, how she will need to change the way she dresses for the next few days.

She is calm and happy, and my anxiety about how she would cope when this time came, dissolves a little. We have talked about the changes in her body, read stories and looked at pictures, I have even shared the experience of my own period with her month after month in the hope that this would normalise the experience for her. When spoken language is not your child’s primary form of communication, you must find other ways to help her make sense of the world.

I think now, that these things must have helped. That it is why she is simply taking this in her stride, as though it were any ordinary day.

We cuddle and read a book together as usual, and I hold her a little longer, a little tighter as I say goodnight. I tell her that she is a young woman now, but she will always be my baby girl and I will love her and protect her as fiercely as I always have. I kiss her, and walk to my own room, where I collapse into tears.

***

Life is like that when you are the parent of a child with a disability — both grief and joy catch you off guard, moments and milestones coloured by the awareness that things will always be somewhat different for you and your child, by the knowledge that there is a parallel life in which things could have been simpler, the challenges not so great.

And so I cry now, for that lost gift of spoken conversations in which my daughter and I would have discussed the joys and trials of womanhood, the emotional upheavals of the teenage years, the questions of sex, of femininity, of love and pain and life. I cry for the life in which I would have had a clearer, well-worn roadmap to navigate the path ahead, instead of the one in which I must create my own, teaching not just myself, but everyone else in her life how to understand and support her through the tumultuous years to come.

***

The absence of family, of the women who would have come together to celebrate this moment and care for both my daughter and myself, adds another layer to my grief.

In Sri Lanka, my own coming of age was a momentous event. I was kept home for seven days, sheltered away from the eyes of the world. Every morning, my grandmother would make me coffee with eggs beaten into it, and every day my mother or aunts would cook a special meal — oxtail soup, the tender meat of young chicken, warm saffron rice. On the seventh day, my mother bathed me in herb infused water, and I wore clothes of velvet and satin, feeling like the princess I’d always wanted to be. There was a celebratory feast for family, with everyone bringing gifts of clothes and jewellery.

Had I been in Sri Lanka, I probably would have baulked at having such a celebration for my daughter. It is likely that I would have been repelled by its cultural basis — announcing to the world that this girl was now ready for marriage. I would have seen my rebellion as progressive, as a refusal to conform to patriarchal traditions.

And yet, from this distance, alone and away from the family and the life that I have always known and compounded by the confinement of the pandemic, these things feel like love, like the coming together of a community to look after you and care for you as you transitioned into a new phase in life. Being kept home for seven days feels not like a restriction, but protection at a time when your body is undergoing what is probably the biggest change it will ever experience as a woman. Having someone cook special meals seems not an unnecessary indulgence, but a way of giving you nourishment and care, teaching you to look after your body in the years to come. The celebration and gifts, a commemoration of a happy event, welcoming you into womanhood with joy.

While I could still do these things for her, it will not be the same, in the absence of the people who love us and the communities that practice them, these rituals lack weight and meaning.

And so, I try to rewrite this story for myself and my daughter, to bring meaning and purpose into this experience, not only as a single mother and a child with a disability, but as immigrants recreating our identities in a new country.

I look for ways to define our voices, to create awareness and give others a glimpse into our world — a reality that hovers between concepts of ability, culture and normalcy, a place that is neither here nor there, yet is the foundation upon which we must build our lives.

***

From the moment of her birth, to diagnosis, to the various challenges that came after, life with my daughter has been a dance, shifting from great sorrow to great joy, to moments of darkness that give way to moments of deep knowing, of gratitude for the life and the opportunities that we are given.

Every time that I am tested by the challenges of her disability, I return to the knowledge that her life path, though different, is no less wonderful, that my dreams and goals for her, no less important, although the ways in which we get there may not be those that I had once imagined.

To usher her into womanhood, is my gift and my privilege. I may be far away from home, but for her, this is the only home she knows, and she is surrounded by love, by people who are constantly seeking to bridge the gap between their understanding and hers, who join me in advocating for her right to a good life, a life in which she is free to be whoever she chooses to be.

My daughter is beautiful and determined, fierce and bold, the sweetness of her personality and sense of humour capturing the hearts of everyone who knows her. She is everything I dreamed a daughter of mine would be, and even as I worry about how she will navigate a world that is not made for her, I cannot wait to see how she makes her mark in it.

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Ayesha Inoon

Writer, based in Canberra, Australia. Debut novel 'Untethered' out in June 2023 (HQ/HarperCollins Australia)