The day I had a bath!

What’s so interesting about that, I hear you ask?  It’s because the bath was following a 4 hour respite package which has been long overdue (plus I had a bath just by myself, which is always rare!)

7 years we have travelled along the special needs path and like so many other families, we have just bumbled along doing the best we can, running on empty and hitting the exhaustion hump more times than I care to count.

With our respite, it’s come at a time where, we again, are undergoing transformation and change.  Oh, isn’t life always the way – it sure seems to come around in circles.  The latest change is that I’ve returned to work full time after working part time for 12 years.  To say it’s a huge adjustment is an understatement, but for the kids and us as a family – even more so.

The husband has had his own dramas too, with ending up in hospital with a staph infection and a bout of scarlet fever. During that time, we were very lucky to have my mum able to step in and help while I was able to continue to go to work, and not actually lose my job in the first few weeks that I had started, never a good look!

This respite package has been given to us by an organisation that has seen us struggle and like many others, we are still waiting for our NDIS package. In the past, accessing respite was always through an emergency means – in which case it’s a short term answer to help you out of the rock bottom you have hit. Ultimately, we want to try and avoid hitting rock bottom but we can’t always do that at times.

The respite not only helps my mum who stepped in and stepped up during the hospital stay, it also means that we can have a bit of a break while we regroup ourselves again.

The thing with special needs parenting is that while these hiccups of life intervene, life still goes on.  There are still the therapy appointments, schooling, the toileting dilemmas, the meltdowns, the communication issues, the health issues, the medications to be administered all under the watchful eye of my husband and myself.  Becoming unwell ourselves, is another pressure to our already overloaded plates.

We took off to our respite with a bit of a spring in our step.  We left our twins with the carer, while we took our eldest out for some lunch at a new shopping centre.  Nothing like a new shopping centre to get excited about (said no husband ever!)

There was live music and many people(!), and in those moments where I was siting in the busy and bustling food court, I closed my eyes and almost imagined I was in a different time.  I was back in the days, when I was young and free, at a music festival.  I was sitting in my chair, swaying to the music, with the young guy on his acoustic guitar no doubt singing while dreaming of playing to a full stadium one day, and not in a food court.  I was so lost in the moment, I was about to get a lighter (my phone) and shine it up like you do at a concert, but then realised where I was.  Instead, I put my phone away, and realised that sometimes, it’s just a little mental break from the ‘thinking and doing’ that we are programmed into when we become parents.

As a parent of both a typically developing kid and 2 kids with disabilities, I know this all too well.  It’s equally intense on both sides of the coin, but with special needs parenting, we have the added intensity of the isolation that comes from parenting children with  disabilities.  It’s not the ‘norm’ so we are always fighting; fighting the system, fighting the judgements that come our way and it’s impossible to truly understand unless you live it.

So, a little bit of respite, where I thought I was at a music festival, was just enough for me to know that I have hit the point where just a simple bit of music, could pick me up.  And that is just the kind of respite I need to keep going.

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