One of the recurring themes of my journey through motherhood is of being different.
Parenting a child with a disability (cerebral palsy) and a neurotypical child, I am caught between two worlds. Thanks to these two tiny teachers, I have a complete experience of motherhood from the difficult to the sublime. But treading this path means I don’t always feel like I belong.
I very much feel ‘other’.
In the special needs world, I have the privilege of parenting a child who is severely affected but not particularly medically fragile. We do not have many hospital admissions, do not spend our mornings and evenings drawing up syringe after syringe of meds. There’s no gastrostomy to put them down. We do not follow orthodox treatment plans.
Fully dependent on others to facilitate both care and fun, T leads a life that can be limited and limiting. But, with a life expectancy of 40, he is not considered ‘life-limited’. This distinction matters because all of these factors of T’s life affect our ability to access certain services such as respite care or charity funding for Disney trips and other treats afforded to those with short lives. We are different.
We are also lucky that this doesn’t matter like it used to, as we now have sufficient private funding to give T all the experiences and extra care he may need in his (still shortened) life. I would give any amount of money never to be in this situation, but his birth was compromised and that cannot be undone. To be looked after and free of the fight for under-funded and unsuitable statutory services and equipment is another part of our privilege. It is an amazing place to be. Yet it also marks me as different from the vast majority of our peers.
I know of the fight and I try to to tell the world how hard it can be to just get by some days. I mean that financially, emotionally, energetically. That’s what people in privileged positions should do. We need to use our energy and position to amplify the voices of those too exhausted, too spent, too shy, too poor, too busy existing against all odds, to make their struggles heard. It’s vital to shed light on these truths. I no longer live that life. I have left the trenches and so I often feel like I don’t belong among those who have it much harder than I do. Do I really have the right to speak for them? Or am I just being a bit patronising?
In the typical world, I am parenting outside the lines too. In the early days, I was as clueless as a newbie yet I had a second child. It was all the fun of the first time around but without that carefree bubble that a birth untouched by trauma affords a mum. I felt a betrayal to T when I was with D doing ‘normal’ things and adoring the ease of it all. It brought up much sadness as well as the joy of watching the miracle of a neurotypical child learn about the world. I noticed every tiny thing she did with the wide-eyed wonder of a new parent, despite being three years into the game. I still do. She is no poor, neglected second child.
Some of my beliefs and methods are unorthodox – I co-sleep with my three year old and still breastfeed her. My beliefs are aligned with peaceful, respectful parenting (although I am a work in progress there), natural motor development, body autonomy, not praising my kids, and eradicating childism. I have already decided that unschooling is the way forward. I don’t shout about these convictions nearly as much as I should. Because it’s different. It’s not the way most of my friends and relatives do things and I am a conformer at heart. A conformer trying to walk her own path and follow her instincts.
Much as want to do the right thing by myself and my children, I think humans need to belong. As Brené Brown puts it, we are hard-wired for connection.
This blog is the consolidation of two of my other blogs – one about trying to be happy and finding a life that fills you up and one about parenting a child with a disability. I want to be able to talk about both things here. I need to be able to write about T and D; the experiences of my neurodiverse kids are what currently shapes my whole life and I need to be able to share it all in once space.
Perhaps you are treading a similar path? Maybe you are searching for belonging. Or perhaps you just want an insight into a different experience of motherhood. I’d like to think it’s not just me typing thoughts into the ether. I’d like to help others with my writing.
This season of my life, my forties, my family dynamic, is uncomfortable but it’s rewarding. It’s hard work, but I’m doing what I believe is right.
It’s motherhood, but it’s otherhood, too.
Vulnerability sounds like truth and feels like courage — Brené Brown