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I feel like writing my school captaincy speech (which I was unsuccessful in achieving. And rightly so. My best friend won the vote and went on to become a barrister. So it didn’t have any hard feelings. Well deserved, I’d say). I feel like it was only a few years ago. Not 27 years.
It’s hard to believe the time is ripe for Mackenzie to be doing the same. How is my baby moving in to her final year of school next year?
Time is a thief. It’s elastic in many ways, stretches and expands the realms of our constructed concepts of time. In other ways, it’s running faster than the speed of light and unforgiving. Moments gone in a flash. The click of a fingers and poof! It’s gone.
It’s confusing, at times, that I have a young woman, nearing society’s consideration of adult-age where alcohol and driving and employment are available to some. But not all. Because here I am, the mother of a child in need. There remains many things she cannot do for herself. I feel like she is locked in a time capsule at the age of 10. But her bank won’t let me speak on her behalf anymore. I need a Power of Attorney for such things.
Though she cannot unclip her bra, or maintain the temperature of the shower if it’s too hot, screaming for assistance to cool it down if she steps in too soon. She can write a speech with leading prompts and has spent the best part of every Monday afternoon this year learning to open a folder and save a document using a voice command software program for the visually impaired. It’s a trip for my beating heart. She exists somewhere between not disabled enough and not independent enough. But she is right there, where she is meant to be. And I love her for that.
I am noticing a softening around the edges of the fear that I’ve carried for what our lives look like when she is no longer in the safe and familiar care of a school for 30 hours a week. Not because I have any more information or foresight for what that will be. But because I have acknowledged that fear, and thanked it for trying to protect me. And then I fell back into faith and trust. I’ve never not landed on my feet, I remind myself. Some great God, or ancestor or Universal Consciousness watches over me, us, and guides us to where we were always meant to be.
I have lived in a perpetual and complex world of quandaries where I’ve felt trapped in my own home because she doesn’t talk to me, but needs me around to feed her, find things on the floor is she has dropped them and incidental care requirements that are the minutia of what her care used to be. But lately, rather than confinement, I’m feeling a sense of connection.
If not for the little moments of ‘Mum can you please … ‘ I’d be mourning the loss of my teenaged child while she ran between friends and boyfriends and jobs and parties. Instead, she’s right there on the couch, texting a million people, listening to music and getting lost in the world of reality TV shows that share children’s journeys through the hospital system.
She’s with me. So with me. And something is shifting within that reminds me that this is not a great problem, but a great gift, and there are worlds of magic that reside in the intricacies of our love and bond.
She is learned. And all of this was but a dream. To access mainstream technology, to take initiative, to do things for her self. I knew it was all possible when, a week after receiving a feeding tube when she was eight months old, she showed me signs of her capacity to learn.
I write about this beautiful scene in my memoir. It was profound. And now, I sit back as my sweet 16 year old daughter overcame many odds and can turn on, open a folder, create a document, add headings and bullet points, and talk about how great she is and what kind of leader she would be, because she is all of that, and more.
She has been my leader, my teacher, my guide, since before this life time. We have traversed lands and plains, time zones and life times, spreading light and joy and lessons. And I rest in peaceful prose that I have done enough. She is all these things she says, and I’m so proud of her. But more importantly, is that she is proud of herself. She is her greatest cheerleader.
I am less fearful, and more excited about the next part of our journey. The gates of the world open up and we have access to everything we could possibly dream. And I’m here for it. I’m so here for it. As I unravel the layers that keep me safe and small and afraid and remember my greatness and capacity to create whatever reality I desire, I will take the time to dream and allow myself the space to ponder a life that continues to expand and grow and gather momentum.
What a blessing it is, for my Soul to have known that there were things for me to learn and so took me on the path to find the teachers and practices and the child that would allow that to happen. I am who I want to be because she is who she was destined to be. And I am grateful to have the ability to see the light, through her darkness.
