Selectively Juggling

Was today typical? Typical of what? The Oxford Dictionary describes typical as “having the usual qualities or features of a particular type of person, thing or group synonym representative“. So given that my yesterday (that is when the prompt was posted) was typical in its atypical type qualities, then yes, it definitely was representative of my normal day. Although I dislike the use of the words typical and normal, as they are heavily imbued with socially constructed meaning and value.

My typical day consisted of waking up between 5:30 and 6:00am and attempting to rouse my daughter from sleep. Somehow channelling an assertive gentleness to prise her from the depths of blissful sleep. I need to do this to ensure she wakes up in a ‘good mood’ and not simply startled awake… She has special needs, a rare genetic disorder manifesting in mild intellectual disability, a benign brain tumour, epilepsy and reduced function on her left side. She is a remarkable soul, hilariously funny, great sense of humour and zest for life, regardless of disability. She is just in the process of navigating teenagehood and hormones, which is hard enough for a neurotypical, fully non-disabled person, let alone a person with complex needs. She had been off sick from school, and I knew that she would be a little bit challenging to wake up and encourage. Ok, a bit like a snake with its head cut off, going from the potential of “Good morning mum, how did you sleep. I love you mum” to “Leave me alone, f-off let me sleep, I don’t want to go to school, I still feel sick” I was hedging my bet, that It would land somewhere in the middle, and surprisingly, by the time she was up, had breakfast, lunches made and packed, and dressed in school uniform, her tearfully terse “I don’t want to go to school, I still feel sick” had evolved into her usual bubbly and effervescent “I can’t wait to get to school, see my friends, talk to my teachers” So as you can imagine by 7:20am, as her school driver (disability supported transport) drove away I can feel like I’ve already run a marathon, well I have at least emotionally.

For ten minutes, I sit down and drink my reheated almond milk coffee, as it has already gone way beyond lukewarm. I prefer my coffee steaming hot. I have a quick breakfast, usually a corn tortilla with vegan cheese. Then it’s on to saying goodbye to hubby, waking my two sons up, and getting ready for work. Usually, by the time I’ve driven to work, I’ve mentally and emotionally reset and reinforced my emotional and professional boundaries, so when I walk through the hospital sliding doors, I’m actually wearing a genuine smile, as opposed to simply a ‘mask’ Having said that hey, sometimes a mask is what is needed, then wear it. Learning how to demask has taken me a considerable amount of work. I am consciously aware of their function, purpose and need. I also do not judge those who wear masks, as I know we all have our battles. However, by the time I have successfully compartmentalised, I can honestly look people in the eyes, connecting as a fully functioning human, not as the bedraggled mess I may have been an hour earlier when I attempted to coax my daughter to get ready. 

At work, I am in the zone, creative, productive and have the energy to address other people’s concerns, issues and problems. I enjoy working autonomously and throwing myself into what is needed. I can pace myself with the goals I’ve set. Since today is my daughter’s birthday, I needed to dash to the shops yesterday after work, as all the Riverdale-themed gifts I had ordered are still in the mail, apart from Riverdale Monopoly. I knew how majorly disappointed she would be. 

So thus far, my typical day was – waking up, getting my daughter ready, rousing family and motivating them, getting to work, finishing work, and running to the shops to grab party supplies and some extra gifts. Let me tell you, i don’t derive much enjoyment from shopping, especially when tired and hungry. So to set the scene. I embarked on an expedited shopping expedition, then back home to start the afternoon circus again. Groundhog day, all over again. 

My daughter was dropped off at home at 4pm; I had already been home 15 minutes, stashed the presents, and eagerly awaited the impending emotional mini-cyclone. She didn’t disappoint; she was tired, ‘hangry’ and a little out of sorts. It took 15 minutes to entice her to the light side. Obi-Wan Kenobi would have been proud of my stealth use of reverse psychology. Plus, my daughter is an absolute coffee fiend. We needed to create a coffee safe to keep the coffee away from her budding barista hands. She loves sugarless black coffee. So mum was ready with some homemade gluten-free muffins and a coffee pod. She made her own coffee. I believe that is an exercise of control and agency, as much as the reward of a cup of coffee. I have discussed this with both her GP and neurologist. She is allowed 2 cups daily, one regular and the other decaf. We sat down and discussed her school day and what she wanted to do for her birthday. The plan was to go to Mad Mex, as they cater for food allergies, intolerances and differences. Soon it was preparing dinner, having family time, making sure my daughter went to sleep easily (she did) and then embarking on a mad capped mission to decorate the house with tinsel, balloons and birthday banners. Then my youngest son needed to just hang with me, talk about his day, and connect. I think he has been like a mushroom, kind of grown up in the shadows of his sister’s special needs. Although he has his own needs. Which I won’t go into here as they themselves are worthy of many words.

Then it was all about attempting to pack some ‘me time’ where I could either zone out watching mindless TV or pour some of my energy, thoughts and concerns into writing. I decided on writing, as it was more conducive to my overall health and well-being. Afterwards, I dragged myself to bed, crawled into my favourite position, and drifted off into healing regenerative sleep, where I am free to dream in amazing lucidity and techno-colour.

So, typical for a parent of a non-typical child, yes. Highly subjective and filled to overflowing with love, energy, frustration, joy, sadness, grief, loss, acceptance, and personal growth. I’ve developed an even keel, a balanced approach that enables me to still find my point of gravity, my point of balance and calm even when set adrift, on a tumultuous ocean of tidal changes, of gargantuan ebbs and flows. Typical in a very atypical way.