Sometimes just a little bit of respite is just enough

By Kelly Wilton

I have just had a bath.

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

For seven years we have travelled along this 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.

This respite has come at a time when our family is undergoing transformation and change.  The latest change being that I’ve returned to full time employment after working part time for 12 years. To say it been a huge adjustment for our family is an understatement.

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

The respite package was given to us by an organisation that has seen us struggling as we wait for our NDIS package. It 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.

The thing with special needs parenting is that while these life hiccups occur, life still goes on; there are still 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 add to our already overloaded plates.

The husband and I 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 as I was sitting in the busy and bustling food court, I closed my eyes and almost imagined I was in a different time and place. 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 (who was 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. As I came back to reality and put my phone away I reflected how it was 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 two children with disabilities, I know this mindset 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. Our life is not the ‘norm’ so we are always fighting; fighting the system, fighting the judgements that come our way – it’s impossible to truly understand what it’s like 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.

Follow more of Kelly & Mikey Danger’s journey at www.lovingdanger.org.   Their patient page for HHE Families can be found at: www.rareconnect.org/en