When reality hits

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I worry for the future. What parent doesn’t?

I booked my kids first ever proper birthday party today. A small affair in terms of what the play centre are used to but a massive leap for us. I used to worry that my children would never have a birthday party, or even understand what birthdays are. Now I am worried none of the children we invite will come. Will my twins notice? One of them might but the other still has no idea what parties or presents or cards are all about.

That worries me. He will be 6 in a few weeks time.

It worries me that he is still in nappies. It worries me that he still has no speech. It worries me that he still can not dress himself, comb his hair, respond to his name, read, write, jump, paint, wash himself, ride a scooter or a bike, understand instructions or use cutlery…all skills other children his age take for granted.

The lady booking the party asked me what 4 things the children would like to eat at their party. She gave us a choice. I asked one of my children and as I looked at the other one a silent tear ran down my cheek. It was unexpected. It was out of character. I try not to cry in public. But at that very moment reality hit me: my son is almost 6 and I can’t even so much as ask him what he would like to eat! He never even came when I called him.

I shouldn’t be with them in a soft play centre; not today. Today is Sunday and on Sunday we go to church. What on earth was I doing on my own with 5 year old twins, nappy bag still in hand, in a soft play centre on a Sunday morning? This wasn’t how it was supposed to be. They should be in Sunday school hearing stories from the Bible, making crafts for me to treasure for years to come and singing choruses. I should be listening to inspirational teaching, having fellowship with friends and worshipping God.

The reality is I just could not face it today. In soft play (at least as quiet as it is on a sunny Sunday morning not long after it opens) we are ‘normal’. The changing rooms are through the same door as the toilets so no-one has to know I am still going to the ‘baby room’ with children more than half my height. As my son buries himself in the ball pool no-one sees that he is licking them all and flicking them in the air to see the shadows they make as they fall back down. The noise of other children playing and the music drown out his squeaks and squeals and the noise of him flapping his arms against his chest. Lots of kids take off their socks even when they are not supposed to so he sort of gets away with that too.

But once we leave reality hits once again. I have to lift them both into their car seats. I have to strap them both in. I have to type the pass code into his iPad because he still has no concept of numbers or what to do. The entire way home (thankfully less than ten minutes) I hear just one word, and it isn’t from the lips of either of the children! Isaac has found an application with numbers that if you press them the name of the number is said…again…and again…and again. It could be animal names, names of people, letters, anything really. He just likes the sound. 2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2…….this is today’s ‘sound’. It may be tomorrow’s too. And for the rest of the week. Perhaps even the week after too. He has no concept of what it means, he isn’t going to repeat the sound or even start to write the number…it is just a noise repeated over and over and over…until you feel sick and want to throw that awful thing in the bin.

The reality is it is THE only thing that he will do for any length of time. And I mean even a few minutes. Other that eating it is the only time he sits still. So the iPad has to stay…2,2,2,2,2,2 included!

I worry what he will find to do tomorrow. I worry that one day there will be no red school jumper in his size for him to wear. I worry how I will continue to lift him in and out the bath, in and out of car seats and his buggy as he continues to grow and get heavier by the day. I worry that he might never ever speak. I worry how people will look after him. I worry I might one day be changing nappies on a teenager or grown man.

Right now I am wondering if he even cares about having a birthday party or if he would be happier alone in the play centre licking the balls and flapping his chest.

Then I smile knowing if nothing else he will love his chocolate birthday cake and whatever the meal is he will eat it like I haven’t fed him in the last 6 years.

Reality hits: I have a beautiful boy and he has made it this far. Whatever the future has we will get through it together. I booked him a birthday party today and there was a time I never thought that would happen.

That is the reality of life with disability: knowing there is still a long long way to go, but knowing you have come a long way too.

When reality hits.

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5 thoughts on “When reality hits

    • He is in a new build school specially designed with this in mind with plinths and steps for the children. And lovely wide toilets too. If only I had all that at home…and staff to help too 🙂

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  1. It is a pity you could not get a lift for him to play with. Then when people come they press the lift. Isaac may follow suit and press the button for them.

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