Special Needs Parents Don't Get Ice-cream

Over the summer break, we went away with friends to a caravan park. 

One afternoon, everyone decided it would be fun to take the kids for a walk down the main street to get an ice-cream.

I love ice-cream. But I couldn't go.

Firstly, Emma doesn't have the physical stamina to walk long distances and she is getting so darn big that it's impossible for me to carry her when she gets tired.

Secondly, it's not safe for Emma to be so close to a main road as she has no awareness of danger. It's especially dangerous in a large group where I know I'm likely to get distracted and it only takes a second for her to escape and run for the road.

Thirdly, we can't take Emma to the shops as, like the eternal toddler she is, runs around impulsively grabbing everything and then has a meltdown when denied what she wants which could be anything from a lolly to the EFTPOS machine.  I'm not overly concerned by the judgement that a 7 year-old writhing on the floor attracts; but I AM concerned about her breaking or damaging something that belongs to someone else.

Lastly, Emma still needs to be spoon fed certain foods and ice-cream is one of those. Most people don't know this as it seems to attract the most disapproval from others, particularly other children, so we never do this publicly. Spoon feeding and nappy changing are 2 things we keep private to try and maintain some dignity for Emma.

I watched everyone walk away and realised I was quite literally alone.

I wanted an ice-cream.

I looked at Emma sitting on the camping chair; she was blissfully unaware that she was missing out. Thank God for that, I thought. 

I reassured myself, "It's okay. It's just an ice-cream"......

But it wasn't just an ice-cream. It was a 'cold' (pun intended) reminder of the isolation that special needs families face, not because we're rejected or lack support, but simply because we can't do what other families do so easily. 

We get left behind: literally and figuratively.

We knew that by attempting this camping trip that it would be a struggle with Emma and we knew it would mean being confined to the caravan park.

It was a dark reminder that as life moves forward for everyone else; time is standing still for us. 

As people move forward and celebrate their children's achievements, we are still stuck at home with the 'baby' enduring sleepless nights, nappy changes and tantrums but without the redeeming 'cuteness' or hope that the stage will pass. 

While most families can enjoy activities together,  our family has no choice but to be constantly split in two with one parent left behind with Emma. 

It was at this moment, one of my friends who I assumed had left, appeared and said that she'd decided to stay with me. I literally breathed a sigh of relief. Her gesture felt like healing ointment on my aching heart. 

I admitted I was trying really hard not to feel sorry for myself. She suggested we walk a few metres over to the camp kiosk and get an ice-cream.

When we got there, I noticed the freezer had Ben&Jerry's which is actually my favourite ice-cream.

Suddenly, I had a profound thought which I believe was God speaking to me.

 "See, you didn't miss out on an ice-cream. It's just different"..........

I became teary with a sense of joy and thankfulness that I hadn't missed out; my father God was with me and had simply provided a 'different' ice-cream. It wasn't the one I wanted and it was different to the one everyone else got - but it was a pretty awesome ice-cream that I loved. 

Finding the joy and hope in 'different'

If, as special needs families, we focus too much on what we miss out on we will live in a perpetual state of resentment towards our child. Feelings of loneliness and isolation will threaten to blind us from seeing the joy in front of us. 

We must learn to 'tune in' to the goodness in our experience (and others) rather than just 'tuning out' the judgement, rejection and loneliness.

It's a subtle difference but has a profound impact on how we feel. 

If we simply 'tune out' the hurt, we go into survival mode: where we find ourselves in a constant state of putting out spot fires which can be exhausting (mentally). Alternatively, we can learn to 'tune in' to the goodness, hope and joy in our experience, and move from simply surviving to thriving. Joy is strong and powerful and blankets (covers) the ever-present spot fires of our experience.

In this way, we are free not just to accept, but enjoy the ice-cream we've been given!  

Whenever I feel my thoughts descending, I stop and find something to be thankful for. 💗

If I feel lonely in my experience, I remind myself of all the other mum's out there walking the same road.....

If I'm upset because someone has been unkind, I try and bring to memory a time when someone was kind and my heart was warmed.....

When I feel like all my strength is gone, I remind myself of how God has always renewed my strength when I've been drained....

When I find myself saying, "I can't do this", I remember how many millions of times I've said that and yet I've just kept on doing it....

And, I will keep on doing it.  So will you. 

Because whether our ice-cream is the standard variety, gourmet, a Bubble O'Bill, soy flavour or vegan.....

....it's still awesome - it's just different.