stress

We Have a Runner!

~ Vickywoo

One minute you’re willing your disabled child to learn to walk, then you’re willing them to have the energy to walk to school… the next thing you know they are running off in random directions and you can’t keep up!

My beloved good girl Audrey has discovered the fabulous feeling of freedom. Of running off alone, ignoring pleas, shouts, begs, stern-voice nos… she just keeps going.

I am fully aware that this is a common trait for children with Down’s syndrome (running off). I’ve met many a parent explaining their need for reigns/buggy straps/confined spaces for safety and throughout this I’ve been able to say, “Hmm, Audrey doesn’t really do that”. However she spends a lot of time at school now and not much time outside in open spaces with just me in charge, so maybe there hasn’t been much of an opportunity for the running? Well, she is taking the opportunity now!

This school holiday has barely started and the running off is becoming an issue. There are several reasons this phase is really hitting me hard:

  1. My lack of authority is now obvious. Both children do not seem to respond to me saying no. It’s incredibly frustrating when you try to discipline your children and they either ignore you or find your stern voice hilarious. Everything feels like it is escalating to crazy threats “No more television, ever!” or that a rage builds up and I’m growling at them and dragging them by the arm. Hideous.
  2. Her special needs are now obvious. I’m definitely upset by this “special needs” trait popping up. I hate the thought of anyone seeing me run after her (shouting her name as she ignores me), thinking “That poor woman, life must be so hard with that disabled child”. I just want people to remember that any snippet you might see of anyone’s life is just that – a snippet. So yes, she is being a challenge at the moment out and about, but on that same day she also approached a crying child to check they were ok, she also sat happily and ate her ice cream whilst her typical brother ran riot in the cafe. She also settled at bedtime stroking my face telling me I’m a good girl.
  3. My ability to parent two children feels questionable. This one gets me. If I can’t take my two children out and about without having to chase after one of them, potentially abandoning the other one, then how an earth am I allowed to be their parent? It creates anxiety around every activity I plan and I’m constantly wondering how on earth other mums cope (with two or more moving children)?

Audrey and I have discussed the running off that happened (a lot) yesterday. She has said she is sorry and she knows she needs to do good listening and stay near her mummy. We’ll work on it, but I know it’s going to be hard. It feels like she is changing and I’m struggling with that. I always describe her as a child who like to play by the rules, which remains true in some respects (shoes off indoors, wearing a school uniform), but also she kind of makes up her own rules!

 

Behind the squares

~ Vickywoo ~ 4 Comments

If you are reading this you probably know I share our life on Instagram and I also blog here. I am always open and honest, but there are many times that when I am enjoying “likes” and comments on an Instagram post about my beautiful children I am also watching them hit each other. Life is full of ups and downs, Instagram has it’s name for a reason; it’s tiny instances shared and you don’t always show the whole story in an instant.

I like to think that I share more reality than those monochrome “perfect” accounts filled with succulents and expensive candles.

However, right now, behind those squares of my smiling children, coffee shop visits and shiny new trainers: there is cancer. Again.

I myself cannot believe how often I have been “touched” (punched in the gut more like) by cancer. My father died of cancer in 2010. My father-in-law-to-be died from cancer in 2011. My sister died from cancer in 2012. My mother died from cancer in 2017. And now… my brother battles cancer in 2018.

Me and my big bro.

It always made me a bit uncomfortable, sharing too much of this sort of thing on social media, but this time I feel so utterly thrown by it, I want to acknowledge it. I want to make sure people are always aware what’s behind the squares.

Just before Christmas, my brother found out he had ‘operable’ cancer. So it was upsetting, but apparently easily sorted. I took him for the operation on 27th December. After that, you’d have hoped it was all onwards and upwards, but he had another niggling pain. So, (after the obligatory painkillers from the GP), there were more scans, mores tests and yes, the cancer had spread.

Today he is in hospital having his first round of chemo. Week on week it has been news that has uplifted us and punched us in that gut again. They can’t quite decide how bad this cancer is. I have continued my weeks on autopilot. Much like when my mum was diagnosed with cancer and when she died, I had to “go on” with an invisible dark cloud over my head.

And so I sit and sing “Wheels on the Bus”, I make small talk with other mums over tea and biscuits “How are you?”, “Fine, fine and you?” I placate squabbling children, make dental appointments, grill fish fingers and function as a normal human being whilst in the back of my mind I am thinking about my brother. Constantly. About how he is young (43), that he’s one of the best people I know and that he doesn’t deserve this. How the kids adore him, how he adores them and how I just can’t take anymore of this darkness. Pain, suffering, death, I’ve had enough.

Sometimes when the kids are resisting their coats or fighting over a plastic egg, I want to scream at them; “Uncle Graeme has cancer! That’s more important than this crap!” but of course I don’t.

It’s pretty crazy to think about all the people “functioning” right now. I mean, I was in TK Maxx at 6pm on Wednesday night buying pants, socks and a jumper for my brother (as he was unexpectedly kept in hospital after an appointment about his scans). As I queued up and subsequently paid, with all the standard niceties “Have a nice evening”, “You too”; I wanted to scream “My brother might be dying! I need to get these clothes to him in hospital!”. And as I walked in the rain from my car to his ward, crying because I just don’t want this to be happening, I actually wanted someone to ask me: “Why are you crying? Are you ok?”, which is odd considering my “Fine” stock response to friends.

I suddenly became very aware that each and every person you pass on the street might well be dealing with something. The harmless old “Cheer up love, it might never happen” feels like such an unbelievable over step of the mark, because stuff happens . We are all dealing with dark stuff, all of the time. Break ups, miscarriages, redundancies, illnesses, deaths, depression, you name it; someone is putting a brave face on over something.

I can only remain hopeful that all will turn out fine (how else can I go on?), but I guess I want to end on two cheesy words that are said a lot right now, but sum up how I think we can make the world a better place and as a reminder that you never know what someone is going through behind the squares/their smile/their ability to say “I’m fine” (when that is, in fact, bullocks);

BE KIND.

x