I finally watched the movie ‘Wonder’ the other day with my mum. I just loved it and in so many ways, I feel this movie really got it right. It was an insight into a family’s life of living with a rare condition and with the associated issues that this kind of life brings. For me, I felt it struck a great correlation between what you see on the movie screen and real life.
It explored many topics relatable to living as a special needs family. The story was about a little boy – August ‘Auggie’ living with a rare facial deformity. It focuses on the family dynamics; the bullying that arose when Auggie joined a mainstream school and the ultimate friendships that were formed by other kids and adults, once they truly opened their hearts and minds in accepting Auggie for who he was as a person. It showed a family, living their life, just like many any other families but with a very different set of challenges.
It went through the main characters and gave a spin on how their world was affected with having Auggie in their lives.
The big sister could’ve been Danger’s older sister! Feeling that she never wanted to ask for help, to be an additional strain on her parents. No matter how much she felt she was being overlooked she always did the right thing by her brother as she had the understanding and compassion that he needed help differently to her. She was able to push aside her very real and valid feelings of resentment by always choosing kindness towards her younger brother.
No matter how people may have felt in the immediate circle of Auggie, that they were perhaps somehow being overlooked or not appreciated enough, whether it was the sibling relationship, or the relationship between the mum and dad, all the characters were able to put aside those feelings because they had compassion and insight to see something bigger.
And this is the lightbulb moment that I have had for myself this year!
Despite my own internal battle with how I may feel that I can’t be there in the way I would like to as a wife, friend, daughter or mother, it is due to something bigger than myself. Sometimes, we have to stop and realise it’s not about us at all. And if you are lucky, the people that surround you, will appreciate and understand the fact that it’s not about you at all, but something bigger that cannot be measured in any form.
It is simply pushing our own ego aside to help someone who needs our help more. Someone who through no choosing of their own, is vulnerable due to their personal set of circumstances.
Mikey Danger, although don’t be fooled by his middle name(!), is vulnerable along with many of his little friends at school. They are in a secure, gated school because I can’t even imagine him going to a mainstream school – 2 seconds without watching him and he’d be off like a shot! And it really only takes a couple of seconds.
Simple routine procedures like a trip to the dentist means paperwork the size of War and Peace due to his complex medical condition.
**Funny story – I couldn’t get Danger into an appointment until the new year. Bryce gets on the phone and calls me back 2 minutes later and says ‘it’s done, I rang and said my son has half a brain, you have to help him prior to Christmas otherwise we will all be suffering!’ Talk about impact! The stars were aligned and right away Danger and Dad were travelling up to Brisbane for a pre-surgery appointment! Doctors and staff listen intently when you explain your son is living with half a brain (and given the fact normal brain development and function is supposed to be made of 2 hemispheres, you tend to create impact!) Even the doctors cannot predict that a simply GA may go astray. It’s very rare, but it still has to be considered.
So even though Danger is more vulnerable than say his twin sister, his presence and personality IS strong and forceful! Just like ‘Auggie’. With the right supports, and the right people around him, he can achieve anything. When people are willing to push aside their own egos to help these little people grow into adults who are very much part of our communities, is a true gift.
We as a family have been very fortunate this year to have a lot of family and friends that have pushed aside their own lives to stop and help Danger achieve all that he can be. From both of our mums helping within our home, pre and post surgery, to our own siblings – Danger’s Aunty (Bryce’s sister) and Uncle (my brother) flying from Melbourne to help us (even when my brother’s wife was pregnant with their own baby!).
It is an ongoing process and it will never stop. It will change and evolve over time, but it won’t ever stop.
Families who have children with additional needs/special needs and/or associated disabilities never take for granted the village that they have around them. Whether a small village, a global village or a bit of both. I like to think we have a bit both which is why I feel the support from family and friends near and far is equally beneficial to us in different ways. The joy of being able to ‘facetime’ with our family is so great for Mikey as he can see and recognise who his family are, near and far, he is beginning to make a greater connection to how he fits in to this big crazy world. We have our own little family but we too are part of something bigger.
And to acknowledge and understand that we are part of something bigger than our own selves, is a sure fire way to grow as a person!