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When I was pregnant with Mojo I remember asking our consultant what I should do about NCT classes. He suggested, quite insightfully really, that I might find listening to other mum's (perfectly legitimate) worries about birth, difficult in the circumstances. It would be easier to go it alone. So I did.
I went it alone for a very long time because even after she survived I recognised that any re-telling of Mojo's birth story smacked a little of drama top trumps so I didn't really talk about it, or if I did, I glossed over the trauma and focussed on the joy. I got used to not really being able to talk to anyone who understood. I found friends on the other side of the world who I identified with more than I did my real life friends because they had been through exactly the same journey with their children with HPE.
So it came almost as a surprise when, a few months after Mojo first started school, I was invited to go for a coffee with a few of the other mums. Being a school-run mum at a special school is a bit different from your average school not least because the majority of the children travel from further afield and arrive on local authority transport rather than being dropped off by parents. It took me a while to work out that most of the adults waiting in reception at 3.30pm were travel companions, rather than parents. The number of parents who collect is actually quite small. You end up seeing the same faces each day. This might make me sound a bit weird but there was an instant affinity, we were all on nodding terms, then small talk terms then we found ourselves in a coffee shop up the road.
Once we had covered off how amazing the school is and how happy our kids are there. We started to swap diagnosis stories and hospital anecdotes and it was the biggest lightbulb moment I've had as a parent.
I'd found them, in real life, I'd found the people I didn't need to self-edit for. I didn't need to sugar coat our reality to. The people who understood the language we spoke in with it's medical shorthand and acronyms. It was so liberating it gave me an actual head rush. I was listening to a mother talk about her daughter's diagnosis and making jokes about how handsome the doctor was and I was nodding along in recognition. We were casually discussing PICU, brain structures, resuscitation, seizures, pain management, grief and relationship strains. We were like your average mums group swapping stories of the non-instagrammable side of life.
It was only as I caught the expressions on the faces of the actual average NCT group sitting next to us that I remembered we weren't. We totally top-trumped their birth stories that day. There are not many social situations when 'Yeah, she nearly died like 5 times' is met with 'oh god yeah that happened to us too'. When I pointed out to the others that I thought we were scaring the new mums we amused ourselves with the idea of 'what the hell kind of NCT group is THIS?' It wasn't a malicious 'them and us' thing it was just a way to cope with having the kind of life that evokes horror struck expressions in others.
From that first meeting we started to meet up regularly, we set up a whatsapp group and before long that small group of women knew more about my life than most of my friends. While the relaxed socialising is essential they also became my first port of call in a crisis. When I was scrolling through facebook late one night and saw that a child with Mojos condition had died, suddenly and unexpectedly, I was able to send an 'anyone awake' message which was met with universal, 'yep, what's up?' and moreover when I explained, it was met with total understanding, one mum recalling her daughter's oncology ward when children being treated alongside them passed away and the debilitating fear that accompanies the grief and sympathy. I had someone there to talk to until I fell asleep.
We started to support each other in more than just the crisis management, we started talking about self-care and the importance of not always making everything about the children (or at least trying!) it made me examine my life and how I see myself.
Then one day someone mentioned Yoga. I've never done Yoga in my life and I was once told at a gym induction that I was the least bendy person he'd ever met. Not for me I thought! Thanks to the enthusiasm and persistence of one of our gang the school agreed to let us use a room there on a Friday morning to set up a parents Yoga session. So I went.
Turns out getting out of my head (in a non dry white wine way) was exactly what I needed. I found the first few times I wanted to cry from the sense of release it left me with. Once I was used to the feelings of letting go I started to crave it. Every Friday morning I was left on a huge high and with a clear head for the weekend. It was quite something.
Our lovely Yoga instructor always tells us that there is such an amazing vibe in the room when we have our sessions. I think the intimacy of working out all our heavy emotions and physical manual handling stresses brings us even closer together. We can laugh, we can fall over, we can cry if we like.
I'm almost embarrassed by how much I love these women, how much I respect and admire them. How much confidence they have given me. How much I need them. We never really acknowledge it, like most groups of friends if we get a bit 'I love you man' we laugh at ourselves. I have warned them however that when we eventually get around to drinking to excess together I will definitely be the one telling them all how much I love them.
They have become my tribe.
I used to roll my eyes a bit about the idea of finding your tribe, particularly in the blogging world. I've never been any good at social media networking but the thought struck me that the other SEND bloggers I was so awed & intimidated by were in fact other real-life school mums going through all the same things as us. Why would they not want to be 'friends' with my blog? This thought led me to being brave enough to join some Facebook
groups and guess what, they are lovely and supportive and kind to each other and it's all a bit marvellous.
So my message here really is to the mums still in that going it alone phase. When you're ready and when you're able, there will be friends somewhere waiting, who get it. I say when you're ready because I wouldn't have been ready in those early years. Most of the friends I am talking about here are 4 to 7 years into their journey, I'm certainly not suggesting that the day after you receive a devastating diagnosis you're all set to find some mates for a good lol about how shit it is. But when you are ready and when you do find them, you'll never look back.