My Love For You Will Carry On Past My Death: Thoughts on executive functioning differences and parenting
About a month ago I found a lump behind my left ear that I couldn’t explain. A couple of weeks later, another one, under my chin. Lymph nodes, enlarged.
This is actually pretty normal for bodies to do. I am not a particularly anxious person about my body and my health - in general I try to ignore my body. I dislike having a body, due to sensory overload being so flipping constant. The demands of eating, drinking, toileting and navigating temperature and so on, are the utter banes of my life.
But these lumps have persisted past the recommended two weeks, have gotten bigger, and one is - as my GP said to me last week with a slightly worried look - “harder and more fixed than I would like”. Apparently hard, fixed lymph nodes = bad. Squishy movey ones = good.
I have been to the ultrasound tech and am awaiting results. It has so far been a tearful wait. However, the tech was pretty chill about the scan, and the doctor has not beaten down my door with the results yet - so I am assuming these are all good signs. It is likely just random inflammation and nothing else (and better bloody not be anything else).
I know these are good signs because in August last year my best mate Bec died from terminal inflammatory breast cancer. Bec was my ride or die (why did she have to take that last bit so seriously??) for 14 years. We met through social justice activism in early childhood education - she was a foaming at the mouth unionist, leftie, rabble rouser, gender whisperer, and passionate educator on Aboriginal rights.
I think about Bec every morning when I wake up, and just before I go to sleep. It sucks. I really, really miss her. There is an ache behind my eyes all the time and I cannot talk about her without bursting into tears. We talked every day, sometimes on and off all day, for over a decade - through breastfeeding our kids, divorce and separation, and becoming single mothers. Politics, union shit, love, kids, queerness, neurodivergence, history, fossils, dinosaurs. There was nothing left un-discussed.
We used to sign off every night with a duck emoji. Quack. We both loved ducks. Sometimes my kid will use duck characters in his games on his Nintendo switch and call me over and say look mum, I was thinking about Aunty Bec.
Bec is survived by her two amazing kids, Lydia and Alby. And the memory of her campaigning work; her contribution to early childhood education, as a teacher and union organiser; by her family, and her huge network of friends. Her copious notes on death and cancer which she called “The Doom Boob Diaries” which she has asked me to illustrate - and I am slowly working on sketches (it is hard, I always end up sobbing which is not so conducive to drawing and a bit wet for my iPad).
Bec with her kids Lydia and Alby, during her cancer treatment - profiled by the Australian Education Union for her contribution to activism and organising in ECEC.
She was so loved and held in the highest regard by so, so many. She was the definition of a really good person. Someone you could rely on. She was solid. Sarcastic. Funny as fuck. Her heart was huge, as was her sense of justice. She was not just a good person…she was the best person I have known, other than my kid.
One way in which Bec and I were similar (well, we were similar in many ways, and also different) is that our kids came first. Always. In everything.
When Bec died, her house shouted her love for her kids at you. Every single wall was covered in drawings, photos, records of their adventures. Bec was not an “insta mum”. She was yelly at times, cranky, always tired. She was also super loving, adventurous, practical and creative. She was messy, outrageous, friendly and forgiving. Her kids grew up with the absolute best mum for them, and she loved them down to her bones. Alby and Lydia Lou - if you ever read this, I can’t wait to tell you so many stories about your mum and how much she loved you more than anything else in the world.
So it with fear and also love that I have been organising my life this last week. While I know that these scans will probably laugh at me and say haha, you dickhead, nothing is wrong - we are just angry lumps without any malevolent cause - I am still scared. I really did not like my GP’s tone when he printed that referral.
I am scared, and getting organised.
I lived 36 years with undiagnosed ADHD. I lived in total chaos. My filing system was what some in the ADHD world called the “SHAPES” system. Stacks, Heaps, And Piles Everywhere.
I didn’t know where my lease was, where my birth certificate was, where my child’s birth certificate was, or where my keys were. I forgot what I was doing walking from one room to the next, and would frequently get into the shower still dressed. I would wash my hair three times before realising I had done so. My working memory was that divergent.
I am sure if I lived in a field with no responsibilities this would be fine (thought I may not stay alive very long) but I am one of those people who understands the integration of the social and medical model embedded into the human rights model of disability - which recognises that disability can be impairing inherently, not just by a lack of access. The social model is right; but impairment is also real.
And because it is real, I take medication for ADHD. Happily, gratefully, without any shame - and I would fight anyone that tried to separate me from my meds. It has given me my life back; dignity, choice and control. I found the way I lived before so extremely distressing, frightening and overwhelming - and I would not go back to it, even if the world was magically accessible overnight.
Even if all my access needs were met, I would still take medication. This is a personal choice, and one I stand by - for me. I also believe that access to medication is a human right; as is the right to decline medication (a more controversial topic for another day).
Before I had med access, I could not organise my way out of a paper bag. A thought that terrified me as a single mother with a high needs child was what if I die? I knew I would leave an unholy disorganised mess, and the stress of this on my child would be felt, as the people coming after me scrambled to pick up the pieces.
So over the last week, I have been motivated by that fear, to get my shit in a pile and get organised. I have started working on a Death File for a tiny select group of friends and family, which will contain everything that opens and shuts so that in the event of my death, stepping in will be seamless.
This is not something I could have done before now. It has taken years of recovery from missed diagnosis - meds, therapy (a lot), access to support workers via the NDIS, and boosts in confidence as things got slowly better - to get here. I have worked my ass off, and tapped into, leaned into, every single support I could access.
Because it isn’t just fear that drives me on. It is love, too.
My little man is eight years old now. He has fluctuating needs, like many AuDhd kids. It depends a lot on what is happening on any given day, really. What I know about him is this: if there is a plan, and there is structure, and the adults around him are calm, he does better.
If I die, I want the adults around him to have absolutely everything they need to manage my affairs without a hitch - or as few hitches as is possible. I want them to have spoons left over to focus on him, and how he is coping.
This leads me to think of the injustice that so many undiagnosed neurodivergent mothers experience through lack of access to diagnosis, medication, and support.
I think - well, what if I had died in 2018 and not now (I am not assuming there I am going to die now, just go with it)?
Would it have been just, that my child would have struggled more because they had a disabled mother who had not been given the tools and support she needed to cope with life?
Would it have been just, that my child would have likely been left without any kind of care or financial plan? Documents? Any kind of framework around them?
Would it have been justice for them, to not have any planning in place around their disabilities, as a high needs kiddo, because their mum had been locked out of any care or support for her needs?
No.
That is not justice.
But that is the world we live in. We currently live in a world where Neurodivergent mothers are given absolutely fucking nothing to help them cope with life, parenting, work, the world.
We currently live in a world where these parents, mothers, are raising high-needs children and dying poor, disorganised, and overwhelmed. No money to leave their kids. No super. No death cover. No documents or care arrangements, no plan.
These mums live every day in the hope that they just don’t die. Because they are terrified that if they do, their children will not cope. We know how genetic Autism is and ADHD, and so we know that many kids being diagnosed now likely have undiagnosed parents who have struggled their whole lives.
The stories we are hearing emerge now of undiagnosed Neurodivergence are mostly from white women with a level of privilege, and while they have struggled - a lot - they are just the tip of the iceberg. We should not make the erroneous assumption that poor neurodivergent mothers do not also exist: they absolutely do.
Silently. Hiding from child protection and death, in terror and chaos, wondering what on earth is going to happen to their kids and feeling overwhelmed at the thought of organising a way out of a shitty fate for them.
As I upload files at 5am, organise links, scan documents, and make executive lists, all I can think of is the fact that four years ago I would never have been able to do this. I also think of the fact that 15 years ago, I lived in a moldy house with rubbish piled up so high that you could barely open the doors, and the electricity being frequently cut off.
I needed help.
I clawed my way toward it, with university level privilege and a white face, a pro bono lawyer and the grace of others.
But what about the people who do not have these things?
What about them?
Why do we assume, in government, in advocacy, that everyone who needs help will be actually able to ask for it? Will be safe to ask for it? Why do we assume we know where all the disabled people are, and what they need?
I am here to tell you: we don’t.
It is that hidden cohort of women that I serve and will try to keep serving as long as I live, and I am hoping I continue to live a long time.
Because I was her. And as much as my life was messy, disorganised, chaotic and overwhelming, I can tell you that something has not changed since then and is the same for every mother I have ever worked with on these issues:
I loved my kid more than life itself and would have done anything to make sure they were ok. Disabled mothers who struggle, struggle because they are disabled and need support.
Their love for their children and their intent to parent should never be questioned.
I want to finish with a story about Bec that really sums up who she was, as a person and as a mother. When she was quite close to the end of her illustrious, wild and wonderful life, her lungs were starting to shut down and she had to make the call to go into hospital. I was visiting at the time. She had drifted in and out of consciousness and I knew something was wrong. It was very frightening for her.
She had only been home from a hospital stay for a couple of days and she knew the kids would be scared and upset about her bouncing back in again. She needed the care though, she knew it was starting to get unsafe being at home.
We had a quick meeting about how to play it (I would stay at the house with the kids, she would go in to hospital for assessment and stay there if needed) and then despite a quivering bottom lip in her bedroom - she summoned the kids to the table for a family meeting.
In her hoarse, breaking voice which was barely there due to the fluid on her lungs, she sat everyone down and she led. She explained to the children in her early-childhood-teacher-voice exactly what was happening, why and when. She was calm and she exuded authority, despite how terribly sick she was.
She knew her kids needed a plan, structure, and information. So, she made sure she had it ready for them. I knew she was in so much pain, exhausted, and was scared. She made sure they had time to ask her any questions they needed to ask.
I still don’t really know how she sat at that table and did that. She was so ill.
This was Bec though. She was a bloody fierce mum. She mothered to the last moments. I cuddled Lydia to sleep, and sent Bec photos of her sleeping bub’s face. She was pretty out of it but texted back how much she loved Lou lou. How much she missed her. I wish there was some way I could bottle how much she loved her kids so they could uncork it on bad days and sniff it. It was potent.
I slept in her bed that night, just in case the kids woke and came into find mum - so someone would be there. She did come home again after that, for a couple of weeks, before she passed. Even in the hospice, she was reading to them; saw them every day.
Love this big hurts to hold in your heart.
It should hurt, I think.
One of the last things I said to Bec was that I promised to continue fighting for mums and kids like us, like our kids, like her and me - forever. I know she believed me. Bec, who helped me with bond when I was broke during Covid, only ever asked that I fight for other mothers. She asked me to lead - without breaking myself - but to do the job I was put here to do.
I will.
Promise x
(Also, here is a song that always reminds me of Bec and results in ugly cries. Except for the kissing parts lol. Miss you dickhead. So, so much mate. Wherever you are. xx)
