The great Lord Buddha said ”An idea that is developed and put into action is more important than an idea that exists only as an idea”.
Well, whilst I DID initially have the idea to start a blog and then to post on a regular basis, I’ve been….well…let’s just say I’ve been a little preoccupied of late. Hence my absence.
But I’m here now and I’m trying to put my idea into action and making attempts to develop it…despite losing my mojo again!
I hope you’re all ok.
As for Hannah, she’s great and scrumptious as always. The ‘terrible two’s’ have well and truly kicked in and BOY do I know it!! I never thought we’d actually get to this stage, but we have, and whilst it’s really rather challenging for me at times, I can’t help but celebrate this development…I just hope it doesn’t last too long!!!
Hannah recently went to her first (and maybe last) football match with her daddy. She wasn’t particularly impressed being there (I can’t exactly blame her) despite having front row seats and despite our local team winning 4 – 0. This is, apparently, quite a rare occurrence – them winning, not Hannah being unimpressed…that’s pretty typical!.
I wanted to post her first ‘selfie’ at the match here….but I seem to be having some technical problems at the moment! grrr!!!
Right, let’s get on with the post shall we?
Embracing difference – Every single one of us is a unique human being and hopefully, someone, somewhere (our creator?) has a life purpose for each of us. We don’t look/think/act all the same. Isn’t that just totally wonderful? I think so. Difference however, for children like Hannah, throws up quite a lot of challenges…and will probably do so throughout the rest of her life. Hannah is ‘different’ to an average child of her age because she currently can’t communicate, isn’t able to walk as other children can, has sensory processing issues etc. etc. (I won’t go on). However, her difference still makes her special (not because she has ‘special needs’ – I prefer to use the term additional needs) but because she’s noticed. Put Hannah in a room and, like it or not, everyone notices her for some reason or other….even the lady in the GP surgery recently who had to move seats because she couldn’t cope with Hannah’s teeth grinding (she noticed)…and the lovely elderly lady in the department store who went to hold Hannah’s hand without an invite and nearly lost a finger in the process (Hannah bites…hard!) (yep, she noticed too!) But Hannah isn’t ‘different’ in lots of ways to an average child; She loves playing with her toys, experimenting, getting into scrapes, getting REALLY messy, finds it absolutely hilarious to burp/pass wind (note polite term there!) and I didn’t teach her that – honest!, loves being swung around (the faster, the better, for her) and a whole plethora of other things too. Hannah is just Hannah. She’s not a medical anomaly that needs fixing. Her syndrome isn’t contagious….although her smile is! She just needs more help with stuff. She’s different…like we all are…and sometimes we all need some help.
I understand It’s important to smile – often, even when you don’t feel like it. Apparently it’s got oodles of health benefits; makes you more attractive (I’d better get cracking smiling then – a lot!!), boosts your immune system, releases endorphins, the list appears to be endless. Sometimes however, if I’m perfectly honest, I don’t want people to tell me to keep smiling or stay strong (I’m sure quite a few parent/carers have heard that). Just occasionally I need to lick my wounds and feel a tiny bit sorry for myself/for Hannah/for our situation. Sometimes I just want some strong arms to enfold me, and someone to say “I’ve got you”. Sometimes I need to be rescued too.
As parents/carers, it’s very easy to put off going to the doctors (or other medical professional) for yourself – Don’t put it off. Prioritise! I said I wouldn’t give advice, but I’m giving it now. If you’re not fit and healthy (physically and emotionally) then you’ll be neither use nor ornament (idiom) in caring for your child. Yes, ‘Mi Lord’ guilty as charged of this crime too…as well as committing crimes against the Domestic Goddess!
It’s common for people to grieve for the child they’d assumed they’d have – so I’m not alone in the grief department. I felt quite guilty at one point when I recognised that I was in the midst of the grieving process; there are SO many people out there who long for a child and are never lucky enough to be in my situation. My heart goes out to them. I now, however, have got through the other side of this process and celebrate the child I’ve been blessed with – despite all the worries and the fact that my life has been totally and utterly turned upside down! I was once told that I would grieve for the rest of my life…I don’t go with that. Some people might do, but not me. Life could have been very different a while ago when her heart stopped beating. I would’ve been grieving then. My girl is still here…she’s breathing, she’s happy (I hope) and OK, for now. I have perspective.
I tell my child I love her…repeatedly, every single day without fail. Even though I have no idea whether she understands what this means or not. If she could speak, then she’d probably roll her eyes in disgust and tell me to shut up! Many of us often don’t tell people or show them how we really feel, Isn’t that sad? That day, that moment, could be the last time we’re ever with them. I realise the importance of that now. Regrets can last a lifetime.
I’m pretty good at giving hugs – since her birth, Hannah has had sensory processing issues. Early on in her life she had some pretty full on tactile anxieties – she couldn’t tolerate anyone touching her and had real difficulty coming into contact with different textures. It was pretty distressing for her and also for me to observe. She’d often stiffen her body and arch when she was picked up and attempts made to cuddle her. But I knew the importance of skin on skin contact for newborns and so I persisted. Only in the last few months has she started to reciprocate these hugs but it was SO worth the wait…and the persistence! Heavenly!! So, if anyone is in need of a hug…just let me know.
Try not to worry too much – yeah, right! Do as I say, not as I do! I think many parents, regardless of whether they care for a child with a disability or an average child just worry – unnecessarily sometimes….well, in fact often…no, scratch that…I worry ALL the time. Apparently, according to my friend Janet, it doesn’t get any easier when your children becomes an adult either. Your worries are just different.
I believe in my inner strength – I DO have it, and I’ve had to rely on my reserve tank of strength sometimes when things have become just utterly overwhelming.
Release your inner child – I’ve learned that you don’t have to be a grown up all the time….for me, that’s just boring. It’s fun being stupid…just for a little while at least.
Never feel alone….because you’re not. I think I’ve mentioned before that it’s a lonely place to be sometimes when you’re a carer for a child with disabilities. There is always, ALWAYS someone on the end of a phone. Pick the phone up and dial a number if you need to and never feel ashamed of asking for help or advice.
Pesky bugs and viruses – I wasn’t prepared to be constantly plagued with bugs and viruses as soon as my child started having contact with other children. Hannah gets ill…then so do I, usually. My friend Christine (my excellent personal medical adviser extraordinaire) diagnoses/estimates that I have another few years left before I build up complete immunity. Thanks for that! Still, I spent almost £30 recently on head lice preventative, treatments and combs…ain’t no head lice coming anywhere near MY child! So, head lice…be afraid…be VERY, VERY afraid…I am armed and dangerous!!
I teach my child not to give up on a task – I’ve had to stop myself (so many times) jumping in and assisting Hannah with a new task, although it’s been so hard to do at times. Many parents want their children to succeed but doing it for them doesn’t really help or teach them anything. Having a child with additional needs makes it even more challenging. I now have to sit back a little, ensure she’s safe and give her more time to achieve the task. One of our mantra’s here at Broccoli HQ is “never give up”.
What IS ‘normal’? – Honestly?, what is it? I really haven’t a clue! I’m certainly not ‘normal’ (I’m sure many of the people close to me would endorse this!) and, to be honest, I’d never want to be ‘normal’ anyway. For me, ‘normal’ is boring. Maybe I’ve just developed a little over-sensitivity to the word in reports and conversations regarding Hannah. ‘Neuro-typical’ sort of leans towards the medical model of disability which also isn’t really acceptable in my world. For me, Hannah is just Hannah. A friend once said to me that each and every one of us has something that we are less able to do (or can’t do) and, on reflection, he has a point. Some of our disabilities are clearly visible; some of our disabilities aren’t apparent. Maybe I’ll try and elaborate on this in another post as terminology can be such a contentious issue.
Slutch – It’s a funny old word isn’t it? Clearly, yet again, this has nothing whatsoever to do with anything…but just thought I’d throw something a little obscure (and more lighthearted) in again *wink*. For those of you reading around the globe (hello and welcome!) you’re probably wondering whether I’ve totally lost the plot by adding this here. The answer is…probably, yes. You also maybe (or maybe not) wondering what slutch actually is. Well, it’s a northern English word, possibly only used in my region by people of my dialect. It (sort of) means thick, wet mud. We also say “Slutched up to the eyeballs” meaning we got mucky/dirty. Slutch – what a cracking word. Oh, and whilst we’re on obscure stuff…does ELO’s Mr Blue Sky make anyone else a little bit teary? Teary in a nice, happy way that is, not teary in a sobbing uncontrollably on the floor way…maybe it’s just me.
Right chaps, that’s all for now. Thanks so much for reading, I hope you got something from this post.
This post is dedicated to my daddy. A unique man. The funniest, totally bonkers, kindest and amazing individual I’ll ever know…and the only person I know who could balance a glass of red wine on his head whilst dancing without spilling a drop! His zest for life was infectious. He faced his battle with cancer with dignity, pragmatism and strength right to the very end and showed me not to be afraid. 25 years ago today he lost that battle. He was only 54 years old. I’m not ashamed to say that life really isn’t fair sometimes. I lost a piece of my heart on the day he died and I miss him every single day. I’m sure my Sis does too.