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How Some Kids With Super Powers Changed My Life

I never thought it was possible to happy cry three times in a row, watching the exact same performance, knowing what was coming and still I found myself wiping away tears.

Recently I was given the great privilege of being the speaker at a show put on by my old high school. It was organised to fundraise for the special education unit there, by the kids and their teachers, for a school camp that is catered especially to them. I spoke about perfection and how I’ve been changed by my interaction with kids who have disabilities or ‘super powers’ as we like to call it. Following is a bit of what I said. It’s my story about how some kids with superpowers changed me and a message for everyone who has a super powered child in their lives.

When I was 17 I left my hometown and all by myself, I moved to Hong Kong. On the outside I was a happy girl but when I left I was battling something invisible. I constantly battled with my struggle to look how I thought the world wanted me to look. A dark force told me I had to be perfect.

I travelled across the world to Hong Kong to work in an orphanage. My thought was that I would be looking after babies for a year, cuddling them, changing nappies, burping and rocking them to sleep. I would be changing the world and while it wasn’t the only reason I went I think inside I hoped that maybe I would find a little more worth for myself while I did it.

When I arrived I found out I wouldn’t be with the babies, instead I would spend the year working with the orphanages older kids, the ones who were from two to six years old. The ones who hadn’t been adopted because they weren’t ‘perfect’.

It was a crazy year. Can I be really honest? At first, I really didn’t enjoy some of the things I had to do. David* had a severe cleft palate and as I fed him, everything would come back out through his nose. Jessie bit and scratched me when I tried to change her. Noah’s tubes would leak and wee all over me as I did his catheterisation four times a day. Adam would bite himself raw. Aaron struggled to adjust to his cochlear implant and would scream at the slightest adjustments. Flynn repeated everything I said. The list when on and on.

But with every day that I served these children, something happened.
Yes, my patience and tolerance grew, yes my knowledge and awareness of issues surrounding disability grew, but even more than that, a deep love and acceptance grew wildly. Deep love for these children who were so far from perfect. I wasn’t changing the world. Something invisible was at work. Some power they possessed was changing me. I came to a solid unshakeable understanding that there are all kinds of perfect.

When we went out, to the park, on the ferry, to the shops, I would see how wrong society was for judging ‘my kids’. Society only saw the strange behaviour, the differently shaped faces, the low muscle tone and the fluttering hands. They didn’t see how those same little hands would come and wrap themselves around my legs, how the little faces looked up at me eager to see that I was proud of their latest achievement. Society didn’t see how when I lifted Noah out of bed for his last catheterisation of the night, with the lights dimmed, he would tangle his fingers in my hair and softly kiss me on the cheek. Every one of those children had some indescribable force. Their difference was powerful and each of them in their own way altered me.
Now 15 years down the track, I also have a nephew, Marco, who is using his own special super powers and I am being invisibly beautifully altered again. Other people see a wheelchair and seizures. I see a boy who adores my earrings and who helps my own children to understand the true meaning of inclusion. I am so grateful to Marco for bringing me a deeper relationship with my sister and forever increasing my depth of love and admiration for her. He is an incredible force for change in our family and the community.

Every one of us are altered by our interactions with the incredible super powered children that grace our lives. Everyday they show up in all the brilliance of who they are and we are richer for it. All around me I see parents, siblings, grandparents, friends and teachers who have been altered and who work to made sure the world can see the greatness in every child. You may not have chosen this path, and it’s certainly a life less ordinary but that’s what superheroes do. They live a life less ordinary. They see things differently. They challenge the status quo because they know that there are all kinds of perfect. You are those heroes too and today I thank you for all that you do.

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Why I’m thankful the Doctor embarrassed me on Diagnosis Day

It was the day I’d waited for. Finally an appointment with someone who may be able to help me understand the root of these endless migraines, the nausea and cramping, the burning muscles and debilitating lack of energy. The rooms were painted a sick off white colour and my chair scraped loudly as I sat down. ‘Brilliant, he’s got a student with him’. I thought to myself as I sized them up. It would be good have two brains on this. Someone young and fresh who’s interested to see what’s going on, not to mention that the intern was rather good looking.

I gowned up as instructed and sat on the bed waiting for them to come back in. The screech of the metal curtain rail echo’d in my tender head and I proceeded to use all my remaining energy, concentrating as hard as I could on the series of instructions and tests the doctor gave me.

After a while he had me lie down on my stomach which I endeavoured to do discretely. I’d worn good underwear but one always likes to maintain a measure of dignity. While the good doctor paused to record some notes the student and I chatted idly, at which point we discovered he was best friends with someone who I had grown up with (and had a terrible crush on for years!).

The doctor returned and as he made his way down my body, testing and prodding trigger points I had a sudden feeling of impending doom. Before I knew what was happening he whipped the back of my gown sideways, slipped my underwear below my buttocks and placed the back of his hand against my cold cheeks. ‘Feel this’ he prompted the student. ‘Lack of temperature regulation’ he stated and turned to scribble some more notes, leaving the good looking young intern to quickly and awkwardly feel me up.

Half giggling and fully blushing I turned away towards the wall and this is how I will remember diagnosis day. Not for the fact that I was only 20. Not because the rheumatologist would finally package up my years of unknowns into a diagnosis of ‘Chronic persistent sporadic musculoskeletal pain syndrome’, like he was proud of himself for so aptly describing what was glaringly obvious. Not because he condescendingly told me ‘You can call it Chronic Pain Syndrome or Fibromyalgia if you like’. No, all of these fade against the memory of the intern clumsily laying his good looking hands on my rear.

I was young and at that point rather uneducated about what was happening to my body and looking back there are so many things the doctor could have done to make that day a little more understandable. He could have talked me through what tests he was carrying out, treating me as connected rather than simply a subject of the tests. He could have explained to me what that diagnosis meant for me going forward and more about my treatment options instead of cutting me adrift with an optional referral to go and see a pain clinic if I wanted to. He was just a doctor, doing his best and despite their very best intentions medical professionals have a lot of people to see, tests to complete and diagnosis’ to finalise so sometimes they’re not able to give us the perfect appointment.

I’ve realised over time though that it’s been my choice to see the funny side and make the best of those visits that kept me going. My husband has been invaluable for this and has always done his best to keep me laughing when things got difficult and to this day we continue to chuckle about that moment in particular. He even walks past me occasionally and gets a sneaky squeeze in, muttering something to the effect of ‘awfully cold’.
Thanks for the memories Doc!.

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Why we love all kinds of Perfect.

Thanks for taking time to check out what we’re all about. I’m Meg and together with Evan, we’re so pleased you’ve made it to the site. I Love Perfect is the natural progression of the ways that our lives have been shaped by disability.

When I was 17 I left home and spent a year voluntarily working in an orphanage. I thought I’d spend the year cuddling babies but instead I was assigned a position with 12 children who had a range of disabilities. It was a real eye opener for a young school leaver! From there I went on to care for children with physical and intellectual disabilites while at college and my life continued to expand as I was lucky enough to know them and their families.

Little did I realise that I would soon find myself classed as ‘disabled’. Diagnosed with post viral syndrome which progressed to fibromyalgia in my early 20’s, it challenged all my thinking on who I was and what I could do with my life. Given that the diagnosis came just a few months after getting married it meant that Evan got pretty familiar with what living with disability looked like too. I’m super lucky he stuck around and we have shared an incredible life filled with jobs we’ve loved, the birth of our two children and more adventures than I can count, all while managing ‘disability’. After 11 years I found myself miraculously living pain free, despite what the doctors said my long term prognosis was. It was just a few years after this that my handsome nephew was born and we found ourselves once again, connected to disability as he was born with his own special super powers as we like to call them.

All this brings us to why we started ‘I Love Perfect’. So much of what we’ve learnt highlights the fact that there are all kinds of Perfect. Coming from a project management background and the design world we took our experiences, our passion for social justice and love of gorgeous things and put them together. Now we’re working to remind the world that ‘There are all kinds of Perfect’.

We call New Zealand home but have businesses that see us vagabonding to various locations around the world. We’re super proud of the collaborations that are happening internationally. Aside from the art prints we’re working closely with jewellers who care about and give jobs to people who are living with disability in third world countries. Soon you’ll be able to purchase ‘I Love Perfect’ jewellery as well as art prints and we can’t wait for you to see it!

We’d love to hear from you about your journey with learning to see the ‘Perfect’ through your connection with disability or special needs. Find us on social media where we’ll be posting some ‘picture perfect’ moments of life with disability. Send us your story plus a pic and you could feature!

Here’s to all kinds of Perfect,
xx Meg and Evan