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A light in a never-ending tunnel

A light in a never-ending tunnel

I am sure that is not about to change in the immediate future, as living with a disability, be it your own or your child’s, is darn blinking tough.

But this month, much to my overwhelming appreciation, I find myself feeling super positive.

So I felt the need to write it down and to share. Because sometimes on days when our lives seem so dark and challenging, it’s nice to hear good news for a change isn’t it?

To believe that no matter how shitty things can be, there can be great achievements and steps forward to look forward to, that will put you where I am today for a wee while.

And I’ve also written it down for my own benefit. So that tomorrow/next week/next month I can re-read it.

When I feel like I’ve had e-blinking-nough, I can remind myself that it is sometimes alright.

In fact, sometimes, the universe stops ganging up on you and throws you a shooting star or two.

Anyway, I should enlighten you as to why I’m in this good mood.

Our little boy, who predominantly uses a wheelchair, took ten steps with a walking frame.

Ten whole steps! Just like that.

I had asked the Physio if we could try standing with one as I felt that the walker he currently had gave him too much support (it had a saddle and he used to sit on it and not take his own body weight).

Nobody has ever suggested it, but I had this nagging gut feeling and wanted to try.

We were all gobsmacked.

You’d have thought I would have cried my eyes out, but to be honest, I was so thrilled I just couldn’t stop smiling.

I forgot to have an emotional moment!

Well, it was completely exhausting and he’s only done it once since, but it’s an incredible start and shows what utter determination this little person has, against stacking odds.

The same week he decided that he no longer wants to wear nappies.

We’ve tried to potty train him before, but we’ve never gotten anywhere as he seemed physically unable to manage it due to his lack of core tone and other bowel issues.

But we rolled with it again, as we have before, just to see.

Secretly praying that this time it might happen.

And he’s only gone and cracked it!

We are in week four now and (apart from if his medicine plays havoc with his tummy) he is clean and dry, day and night.

And we still have a few months to perfect getting to and from the toilet and how it’s going to physically work for him at school when he starts this September.

AMAZING! Go Hadley!

Which brings me to the third bit of cracking news.

We have chosen our local mainstream school for our twins. They will be together and it’s going to be an easy journey to and from.

But it was a huge risk for us and we thought long and hard about it. But we are already so glad we did.

The head teacher and the other staff have been incredible.

They have welcomed us with open arms, already had us in for loads of visits.Bought the kids presents! (I know!).

They have excited them beyond belief about starting school. Which for a little boy who has only just settled at preschool after two and half years, is just incredible.

Not only are they physically adapting the school (I know they would have done that anyway), but they are educating the children, staff and parents about Cerebral Palsy and disability, by arranging for us to speak at the new parents evening (gulp) and by having a professional speaker with CP to come and present.

They are also involving us, and the children, in the recruitment process for Hadley’s Teaching Assistants.

So he gets to have the ultimate say on who he wants to look after him at school.

I think that’s just blinking marvellous.

I have gone from dreading school so much it was making me feel sick at night, to looking forward to it more than Christmas!

Oh and last but by no means least (I will regret saying this I’m sure as it probably won’t last, but here goes)….After four and a half years, my awesome little boy has started sleeping through the night!

I never thought I would hear those words come out of my mouth! It seems to have coincided completely with the toilet training, but who knows, that might be coincidence.

Most days he’s in bed until 5.45am and I can most definitely live with that.

Especially as at his worst he would be awake for most of the night from about 1am onwards!

Typically, I am still waking up as I’m panicking every time he doesn’t wake up, but I’m hoping I’ll grow out of that right?

Stupid sods law gets you every time.

This unbelievable month has put my mind at rest just a tiny bit.

I feel that all the worrying, the guilt, the dark times beating myself up that I’m not doing enough for him, not pushing him enough, were probably for nothing.

He will achieve in his own time.

On his own terms, when HE is ready.

I need to trust myself and my instincts.

I need to believe that I will know when that time is right and will help him make it happen. Just like this past month.

I am going to end this here…before it’s too late and something awful happens to end my wave of happiness.

Here’s to the good times. x

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Brisdion

Meet Our Blogger

I am Sarah. Mum to five-year-old twins, Erica and Hadley. They were born at 27 weeks gestation and as a result, Hadley has Cerebral Palsy - Spastic diplegia/quadriplegia (the doctors can’t quite decide) with low muscle tone in his trunk. This means that he cannot sit, crawl, stand or walk at all unaided and uses a wheelchair mostly. We live in the New Forest with the world’s fattest tabby cat. We are all doing our best.

View Sarah’s Profile

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