The Journey Begins

Thanks for joining me!

I suppose it’s important to give a bit of background as to why I’m doing this. Short answer, I’m not entirely sure yet! I know that seems like a pointless answer but so much has happened in such a short space of time I’m hoping that writing it down makes some sense of it. Maybe somewhere in the middle of sharing our story we can help others making the same journey. Getting a diagnosis of lifelong illness for your child is shattering, scary and life changing. It’s not what you would plan, it’s a journey you didn’t intend to take that doesn’t have satnav directions. Initially it’s like finding your way in a dark room, there are barriers and obstacles that you can’t see and have no idea where you will hit them. It’s the great unknown and sometimes in the short term it becomes more scary the more you know and then strangely it starts to become the norm. I’ll be honest at times I’ve been sad, not with what I’ve got but with what I lost if that makes sense. When you have a baby you make plans, you don’t ever question your expectations you make plans about their future. As a new mum you join baby groups and a constant cycle of comparison begins, did your baby smile yet, coo, roll over, sit up? You think you know the path you will follow, you’ve bought the pack of milestone cards to mark each momentous occasion, then things seem to go a bit off course. Your baby did roll but isn’t doing it any more, he can’t sit up. You start to feel a little bit out of step with the other mums and you feel the first bite of panic but you tell yourself it’s ok, your baby will get there, it will just take time. You wait, you watch, you encourage, you do everything you think you should and things aren’t getting better and there is a twinge of sadness watching his friends learning new skills and developing in the way you had imagined your own precious baby would. You ask questions, you are reassured it’s all ok so when you finally sit in a room with someone who tells you that your beautiful boy needs brain surgery all your plans are gone you just don’t necessarily fully grasp it at that moment. You are swept up in a whirlwind that moves so quickly you can barely breathe, they operate and in a naïve way you think “ok they’ve fixed him”. They send him home with a small booklet of what to look for if his shunt they have fitted fails and at that moment that seems to be the only issue, what if it fails. There is no real discussion of what it will mean to him and his development, just an understanding that he shouldn’t play rugby, head footballs or go scuba diving. You know his head is big but in the words of the surgeon “as long as the surgery was a success the growth will stop and he’ll grow into it”. So it’s ok, they’ve sent him home it all seems very casual so now things can return to following the plan right? Nope entirely wrong! “Growing into your head” and recovering from acquired brain injury is very much more complex than you thought when they sent your baby home after surgery. It is hard, it takes help, it takes fight. We are lucky that during this journey we have met some amazing people who have helped us to deal with and understand what we are dealing with, they are the maps where the satnav failed us. These people saved Charlie’s life every bit as much as the surgeon, their devotion and hard work gave him back what he lost and every day I am thankful for their place in our lives and I hope to talk more about this in my blog going forward. I recall slowly realising that things weren’t “fixed” just because he had the shunt and deciding I had to “fix him”. I know that sounds awful as he’s absolutely wonderful but I remember saying on one of many phonecalls that he was born perfect and they broke him and that someone had to help me fix him, I was screaming for help, I was lost, I’m actually crying writing those words as I don’t think I realised just how lost I was at the time. I know I’ve kind of wandered off track a little but that is the thing about this journey, it does that and you kind of have to roll with it. So to be honest I’ve come to realise it’s ok to be sad sometimes, I lost something the day we walked into that paediatricians office and it’s not something I’ll ever get back. I also know that having Charlie in my life and all those who support and help him has enriched my experience as a parent a million times over. His determination and will to succeed is captivating and I burst with pride daily and feel blessed to be his mummy. The label disabled was a hard one to accept but as a wise friend said “don’t focus on that word, use differently abled and remember he won’t make you any less proud, in fact you will be so proud because he will work so hard to reach his goals” and she was one hundred percent right (although in fairness in nearly thirty years I’ve never known her to be wrong). Maybe one day someone will see Charlie’s story and be helped by the journey we take. I hope my first attempt at blogging makes some sense and maybe next time I’ll start at the beginning because in the words of Julie Andrews “it’s a very good place to start”…………………..

Good company in a journey makes the way seem shorter. — Izaak Walton