The emotional rollercoaster of special needs parenting and the support we need

By Kelly Wilton

I step into the hospital lift; the doors close behind me, and I sigh deeply. The tears well-up and are about to spill. I have exactly 8 floors before I need to compose myself. So, about 6 seconds.

The doors open, I take a deep breath and step forward into the busy hospital foyer, bringing myself back to the present. All my emotions that were bubbling up just seconds ago are yet again suppressed.

Moments before, I had kissed my son on his cheek and he was wheeled away into surgery for his second brain operation in two years. I ask myself ‘how is this happening again?’

This is often what it is like. As parents of children who live with chronic and complex conditions, we find ourselves in hospitals far too often – attending therapy, attending doctors appointments, seeing specialists. And for much of the time our feelings get pushed down. We suppress, suppress, suppress.

Until we can hold back no longer.

Until someone, or something, tips us over the edge.

When this happens, whoever is closest at the time runs the risk of having to bear the wrath of a special needs parent who has hit her limit. And if we have a ‘show kindness’ motto, we may even apologise quickly, make our excuses and move on.

I feel like this often and I feel for family and friends who may not understand what I’m going through. How could they even come close? Unless you walk in our shoes, you just do not know.

But even if friends and family don’t understand, we still need strength and support from those around us if we are to continue our fight. Medical needs aside, the fight for services alone is enough to wear us down; services our children require to live their best life, and which they are sometimes not able to access due to a myriad of reasons.

I’ve started to think and now believe the following: 

Instead of thinking my family is too much for some people, I now think that maybe those people aren’t enough for my family.

So break your circle if you need to, and rebuild it by making it smaller but stronger. Choose who has access to the extraordinary dynamics that make up your family and fill your life with people who will support you when times get tough.

We need to adjust and start focusing our energy and emotions in the right places or else we will burn out.

My family dynamic, and yours too, deserve something more.