I fought hard to have my daughter in the safest way possible. She was born with my drugs swimming in her blood. And yet, my early realisation of the folly that one can ever be a perfect parent or have the perfect baby was actually liberating. I let myself off a number of hooks early on by doing that and I think it has served Usha and I well. I’m okay being the vaguest mother in the playground for example. I’ve never baked her a birthday cake because I can’t follow a recipe due to some of my cognitive deficits. But I can throw a fantastic strobe-light free disco and I’ll always notice the child in the corner who’s struggling to join in. I’ll meet a challenge and flip it to work for me. The journey of my parenthood meant overcoming challenge from the very beginning.
Despite the compromises of my pregnancy (the most planned thing I have ever done), my daughter was born as perfect as the next healthy baby, indeed more perfect for having ten fingers and ten toes. That was one of the first questions I had about her when she arrived, one immediate anxiety ticked of the list. For most new mothers, such worries didn’t even exist but for me the extra nipple, the extra digits were at the mild end of the spectrum of what I feared, what I imagined. But my Usha and I fell smack bang where the statistics would have us, free from abnormality and safe within our world. The monster baby of my imagination was not born, and in its place was this beautiful baby, with the largest brown eyes in the entire world, eyes that centered on her parents and changed us immediately into better people. Love took new forms, as the early breaths were drawn and some of the darker contours of my mind shifted in the changing light.
I think the juggling act of parenting with epilepsy has actually gotten harder over time as my daughter’s grown, not easier. Or maybe I’m just more conscious of her growing awareness and she chafes against my lack of a drivers license, of our difference and my struggle with fatigue and managing triggers to stay well. She’s a good kid, a compassionate one but its normal that at this age, she wants to be like everyone else. Like everyone, I get things very wrong sometimes and there are situations without an easy fix. All anyone can do is try their best.
For example, I live in Sydney and the summer’s starting to warm up. It’s hot today and yet I still have parental responsibilities for my daughter, and she wants to meet a friend at the pool (COVID’s pretty stable in Sydney at the moment). I’ll do that but I’ll confess that growing up with epilepsy I have a fear of water. I can swim well enough and I spent lots of time by the water growing up but I also grew up with a lot of anxiety around drowning. My family were really scared that I’d have a seizure and drown and that was drilled into me. It makes a casual trip to the pool with my kid pretty tough. Especially as without a car/license a 30 min walk in the heat to get there. Growing up with epilepsy, parenting with epilepsy, living with epilepsy is tough at times and you don’t ever get to take the day off.
And yet Epilepsyland is where I grew up and within its darkness, I really have (mostly) flourished. Living with epilepsy I have developed traits of persistence, resilience, and patience. It colours how I deal with disappointments and missteps, its dark shadings divide the world into safe and unsafe, tethering me tight to home. It lays me low and makes me sad, yet it has undoubtedly made me a better parent. With my daughter I find reservoirs of creativity, love and wonder within myself that I had not known were there. How can my world not be as extraordinary as my brain, when such love exists, and such strength lies within me fed and nurtured by my child?
Prue
