It’s been almost five years and I have never heard my daughter’s voice.
Sure, there are sounds and laughter, but I have never heard a single word fall from her lips. Sometimes my mind plays tricks on me and I think I hear her say a word, only to quickly look across at her and see her focused on television playing with a toy.
I often wonder what her voice would sound like or the conversations we would have.
Sometimes in my dreams I hear her voice, it is so real that I startle awake with happiness, to find out it was only dream. My heart sinks a little when my mind catches up that it was only a dream. The feeling of the dream often lingers throughout the day and it reminds me to stay open to all the possibilities and potential.
Everything changes when you have a child with additional needs. I notice so much now, all the little things. Like the conversations between parents and their young children at the local shopping centre or cafe. The way in which there is so much freedom in their ability to express to one another. Or the way a toddler will happily feed themselves, sit in a highchair and play games.
I don’t look with envy, instead I look on with wonder.
I marvel at all the little things now, the little things that in the absence of my daughters’ ability to do them, has made me appreciate them like never before.
Which brings me to the topic of charades.
Have you ever played a game of charades?
How good are you at it?
Are you better at playing the part of guessing or performing charades?
I can say that my charades skills have increased exponentially since my daughter arrived.
The way in which I communicate with her is remarkable when I really stop and think about it. That is, when my mind is able to stretch beyond the limiting beliefs and expectations on “how things SHOULD be” instead of how they are.
Chiara is non-verbal, her eyes are the main portal for her communication. Outside of that I am only left with my intuition, on what I feel her needs are at any given moment.
There are moments I connect with her on such a miraculous level that I am moved to tears. I call these moments ‘still-point’, where we are quiet and communicating with the most powerful energy. Her mind is open and clear and I am present to every micro-moment with her.
The kind of moments where we have conversations; I literally talk with her and we understand one another clearly. She tells me about her day, I respond and then I share my day. We listen to each other and respond, if I am open enough to listen, really, really listen. Yet there are no words from her, instead I respond to her cues and know 100% what she is telling me.
However, there are days I am too tired, too frustrated. I can’t seem to understand any of her cues, her body becomes rigid from the muscle spasms and her cries of frustration coupled with my not ‘knowing or understanding’ creates a whirlwind of chaos. All I want is to to hear the answers through verbal communication, ‘yes’, ‘no’ or whatever she needs to express.
In these moments my mind starts to focus on the lack.
If only she could talk and tell me why she is upset.
Maybe she is hungry, tired? Maybe her clothes feel too loose or tight? Perhaps she wants to play with the blue toy and not the red? She may be in pain or have an itch she can’t reach due to her physical limitations. Or maybe she wants to tell me about a bad dream she had?
God only knows, but I notice just how easy it is to slip into the internal sabotaging dialogue of “this is just so unfair, it’s hopeless, how will I ever know what she needs all of the time? If only my sweet girl could speak and free her internal world….”
Some days I need to understand the difference between what is the disability and what is just the typical responses from a toddler. They can be so similar yet worlds apart depending on the situation.
Some days I need to surrender into the unknown and trust that all is okay, verbal communication or not.
And on other days I need to remind myself there is a powerful amount of potential – waiting in each moment of charades with my daughter.