• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

As Much As I Wish It Was, Life Is Not A Pinterest Quote.

As Much As I Wish It Was, Life Is Not A Pinterest Quote.

Sleep is ESSENTIAL, for everyone. We all know this.

Why is it so hard for my little boy?

He is constantly exhausted.

He cannot get comfortable at night. He cannot switch off. His legs hurt.

He cannot sleep properly.

He must feel dreadful. Because I know I do.

I feel like I’ve been beaten with a club for years. Like somebody has run me over.

My mind is not clear. I cannot rationalise anything! I lose my rag constantly!

I cannot get things done. And a mother of a child with special needs has to get things done!

There is no choice. So why does this happen?

I grumble about lack of sleep all the time.

And so often I’m met with, 'We are only given the challenges we can cope with,’ - you know the one where because your child was born with a disability, it makes you stronger than everyone whose wasn’t?

And every time I hear it I silently implode.

I know people mean well. But what an absolute load of crap!

If my son could sleep and I could therefore sleep, life would be so different.

Life would be manageable and less stressful.

It would be enjoyable. We would be further along with everything, from my to-do list through to his mobility.

And I can tell you now. I absolutely cannot manage it!

Not with everything else on my plate. A plate that feels more like a giant platter that is constantly over spilling and getting worse because of the lack of sleep!

I am constantly broken.

I may not look broken to you, because to save your embarrassment, I politely thank you for citing that proverb to try to make me feel better. But it doesn’t.

It just makes me feel worse. Because to me it translates to, ‘I’m a crap parent’. Because sometimes, I really cannot manage what I’ve been dealt.

I know that is because you cannot see the paddling going on beneath the water.

The desperate struggle to stay afloat and save myself from drowning.

I am just hanging on in there until I finally cannot paddle anymore. Which clearly I cannot let happen!

So rather than thinking I’m some sort of superhuman, which I am not, why not just pop over and make me a cup of tea or just give me a hug when you see me?

That would be so much more helpful.

So I know you know, that despite the fact I’ve covered the bags under my eyes as best I can with make-up and have put on a cheery Mary Poppins-esque grin on the school run, I am rather worn out.

And that’s an understatement.

Firefly Blog

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


Meet Our Blogger

For Firefly, life is all about experiences and being face to face with friends and loved ones. By enhancing the child's perspective and giving them the tools to 'join in', the child not only has the opportunity to participate, but can also be at the heart of it.

View Firefly’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...