The Long Dark Tunnel

After I’d given birth to Joseph, I was expecting this happy flowery parenting experience that everyone else has. Yes there was an expectation that there would be a few sleepless nights but nothing a shift worker couldn’t cope with. I was expecting a few leaky nipples, but breast pads would fix that. What else could possibly be thrown at me that couldn’t be fixed with a trip to a supermarket or a power nap on the sofa?

How about the child that never slept for 18 months? And when I say never slept, I do actually mean that.

How about the child that was diagnosed with acid reflux after being admitted to hospital with the words written across his records Failing to thrive? Yes people still do actually use that shit terminology.

How about surgical procedures to correct a block tear duct? (his not mine, there was no chance of mine being blocked with the amount tears that flowed through them)

What about the casual mention from the doctor, when he asked us at 8 months old whether anyone had told us about Joseph’s heart murmur?

Or it could have been the lurking breast lump after finishing breastfeeding that was biopsied. Or the two admissions for myself for an abscess in a place was that rather painful to say the least.

This was all ongoing whilst my mother in law was fighting her own battle with a brain tumour and that affected the whole family in more ways than you could ever imagine.

I was actually looking forward to going back to work after maternity leave for a rest. Could anymore shit be thrown at me? Possibly not, but all people saw on the outside was someone who’d had a few unlucky breaks and managed to keep afloat. The cliched image of the duck’s legs flapping around under the water springs to mind.

I wouldn’t allow anyone to think that I wasn’t coping with all of what I saw as normal life events. I wasn’t sleeping and I was tearful. Mainly behind closed doors, because to admit how I felt would be an admission of failure.

Things would soon get easier, Joseph would eventually start sleeping better and life would soon be that picture of flowers and happiness that I had imagined in my head so long ago.

Only that never materialised.

No sooner had Joseph’s reflux episodes settled down, I had a number of professionals knocking on my door (metaphorically speaking) asking questions around Joseph’s development. They were not welcome at my door. I knew what the questions were implying and I was far from ready to embark on another journey to what appeared to be autism street. They literally could have shoved their books, questions and notes up their arses because I was ready for some slack to be cut.

Autism was not welcome at our house.

I read so many stories about families begging for help yet here was me shoving the middle finger up to it all. And despite me shutting the door and giving the middle finger, it kept on knocking until I finally had no choice but to stop hiding behind the sofa.

So when I say I felt like my world had ended and I was grieving for what I had lost, you need to take into account what had gone before (and my summary is a very much simplified version of events). It’s easy to judge people based on your own experience and how you have dealt or would deal with a diagnosis, but until you know the battles someone else has faced, it’s a pretty downright blinkered view. I won’t go any further with that as this is not about the narrow-minded who sit behind the keyboards and judge.

A divorce followed and finally over 4 years after Joseph was born, I recognised that enough really was enough. I couldn’t function on a normal level and it was impacting on every aspect of my life. Yet still, nobody could see that. I felt a fraud for accepting praise for being some sort of woman who people should aspire to be. Someone who could manage a boat load of complex situations and still carry on.

That first step in admitting to myself that I wasn’t managing was hard but to admit to those around me how I felt was somewhat harder. I didn’t want them to be disappointed in me for who I perceived I’d become.

I had this crazy idea that people looked at me differently because I had a child with autism. As if we were all flawed on some level or another which was probably why I found it difficult to talk about Joseph and his autism.

Living life with autism, has extreme highs and lows and I can only try and imagine how Joseph feels dealing with many situations that can only be described as ‘challenging’ but all of that impacts on me daily. I worry every single day about the present and the future. I worry about what will happen to Joseph when I am no longer here and who will fight his corner the way that I do on a daily basis.

There were times that I felt I wasn’t good enough for Joseph and that he was deserving of a more patient, relaxed parent who didn’t want to stick the middle finger up and mutter Fuck My Life twenty five times a day.

I’ve come a long way since the good old year of 2012 and I’m not afraid to ask for support both in the physical and mental form. I know admitting you need help is not a failure it’s a measure of your own success. Mental health problems are likely to affect all of us at some point in our lives and society has become more accepting of that. The road to recovery is a long one and periodically those feelings resurface.  I’ve always had an army standing by my side, but these days I’m more aware of it.

To all the people who read my posts and think you’re not good enough, you are.

You and only you are good enough for your child.

I like to think of me and Joseph as a perfect fit.


You may also want to read Fixing Me

4 Comments Add yours

  1. I love the way you write so honestly – I think this will be a massive help to other parents who are struggling with life not turning out quite as they’d expected. best wishes. #spectrumsunday

  2. This post is perfection, says it all really. And wow all the stuff you went through at the beginning (I thought WE had a rough start but it’s nothing in compatison really). Autism wasn’t welcome here either at first. Yet here we are now, lol. Lots of love to you and Joseph, and thank you for writing this very relatable post! x

  3. Lady Nym says:

    Wow, you had an awful lot thrown at you! I’m so glad things are going better, now.


  4. Asking for help and accepting it are different things. Sounds like that army by your side is worth calling on when you need it. Thanks for linking to #spectrumsunday

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