TEENAGED + DISABLED - THE EXTREMES OF SPECIAL PARENTING

Mackenzie had an end of year award ceremony at school this week and she didn’t want me to come. It was the first time parents have been allowed into the school for an assembly since covid. It would have been the first time since she started there almost 2 years ago that I had an opportunity to connect with other parents and be part of Mackenzie’s engagement in her school.

She was adamant that I was not to go. She matter of factly said, “I’ll see you in the morning. I don’t need to see you at school too”.

Ouch.

I’m navigating Mackenzie’s journey of expansion and evolution into a teenager, whilst also being a child with a disability that requires 24-hour care. It’s an absolute mind-fuck. I get pulled between two worlds that barely meet anywhere in the middle and I feel tripped out by a reality that feels difficult to grasp at times. 

As my dear friend Franceska said, it is a ‘journey of contradictions, wonders and wondering’.

I’ve invested everything I’ve got into supporting Mackenzie’s growth, development and capacity to expand her world beyond me. There was once a time when not being with me was a cause for significant anxiety. She needed to know where I was, what I was doing, and when I’d be back. And I’ve held the vision for her to not need me in the same capacity that I once felt suffocated by.

So I was equally proud of her robustness and certainty of not needing/wanting me there, as I was devastated.

14 years of nurturing, and giving an astronomical amount of care and support, well beyond what I thought would ever be required as a parent, and then in one sweet statement, she cuts me off.

Snip. 

No gentle ease, no dappling, no dipping the toe. Just a cold stone cut and ‘peace out mother fucker ✌🏻’. 

After I dropped her off I passed all the parents who were going in to be there for their children. They made passing comments about how I was going the wrong way 🔙 I explained that Mackenzie didm’t want me there and kept walking. I wondered if this was how my mum felt when her four children decided we no longer needed her?

When I got back to the car I felt sick in my stomach. It felt wrong, and bloody rude, that my teenaged daughter was so capable of dissing my presence. Un-required, un-wanted. 

Teen-aged in some ways, in other ways like a newborn baby requiring 24 hour care. 

‘You can’t come to my assembly, but I need you to undo my bra because I don’t have the finger dexterity to do it myself’.

‘You can’t come to my assembly, but I need you to help manage my personal hygiene when I have my period’.

‘You can’t come to my assembly, but I need you to brush my hair and tie it up’.

‘You can’t come to my assembly, but I need you to make me food and pack my school bag’.

‘You can’t come to my assembly, but you can’t ever leave me at home alone or do anything for yourself without arranging care for me’.

‘You can’t come to my assembly, but you are responsible for every single aspect of my life’.

It's a fucking trip for my heart. 

Space. But not quite space.

Independence. But not quite independent. 

Special parenting is a wild journey. The emotional, physical and energetic terrain is unlike anything you could imagine. Other special parents know this terrain and we hold this thread of understanding. It’s underground, and mostly unspoken. These moments when our hearts are ripped out of our chests and we dive into a frantic fumble to messily pack them back in so we can show up for the next moment, whatever the hell that will be. And although we are well versed in not knowing, at times, it shocks. Hard.

It requires a level of surrender and resilience that is not teachable; but earned, through deep suffering. Through trial and error. There is no handbook that educates on how to traverse these wild waters.

It’s a difficult balance of two extremes - somewhere between the ordinary and the extraordinary. And somehow, we’re meant to hold it all.

For them. For us. 

It’s heavy, and liberating. It’s devastating, and incredibly rewarding. The extremes at which we dance make you feel crazy in one moment, superhero the next.

Honouring all the parents out there who are being cut off by their special kids, but only to the extent to which their disability truly allows.

I feel you x