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EVIE
It began with Evie Amore Callander A little girl, our daughter, born with a rare chromosomal condition that meant we needed to take each day as it came. Readjusting our dreams as a family, our expectations and our lifestyle. Thoughts and dreams about the future was removed, in its place an appreciation of each moment. Our journey with Evie was hard. Harder than we would have ever thought we could have coped with. We were dealing with stress and heartache on a daily basis that we were completely unprepared for, particularly the regular emergency trips to hospital where her life hung in the balance. However Evie constantly amazed us with her strength and determination to survive. |
Evie Amore Callander 30.03.08 - 10.10.10
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Over time we noticed that Evie responded to particular environments in a way that made us think she was experiencing them differently to other people. For example, whenever we drove on a section of road between Timaru and Christchurch that has a number of large pylons, she would cry, every single time, day or night.
Then we noticed this extended into supermarkets and anywhere there were electric sliding doors. It was as if she had an electromagnetic sensitivity that was unique to her. We started saying she had super powers as a lighthearted way to describe this phenomenon. We soon realised that her entire character, the things she was teaching us and those around her were very profound. Her strength and bravery in extremely tough medical situations, the way she evoked a depth of love in people that they hadn’t experienced before. Her fragility and her pure joy disarmed people and drew them in. Even down to how she got round - scooting on her back on the floor. These things made her unique, distinctly Evie, and we referred to them as “Super Powers” by now they were no longer lighthearted words, but incredibly real.
“Super Powers” became a way for us to describe Evie in a positive manner when people asked “what’s wrong with her?” We were constantly faced with the medical reality of Evie’s condition and the “Super Power” mentality helped balance the deficit language often reached for when describing disability. This in turn helped to bring out Evie’s best and helped others to see it too. The specific words “Super Powers” are not as important as adopting the attitude of looking for and celebrating the good, the beautiful and the moment.
We are very grateful to have enjoyed 2 ½ years with our daughter. All the doctors, nurses, ambulance staff and therapists involved in Evie’s care did a wonderful job of helping her to survive and to thrive, allowing her to reveal her incredible character.
THE DREAM
The idea for this book was to meet and photograph other children with chromosomal and genetic conditions and discover their Super Powers. It has been a magnificent honour to travel New Zealand meeting ordinary families being made extraordinary through the journeys their children are taking them on.
We’ve done our best to fill the pages of the Super Power Baby Project with children as their parents’ see them. The words that accompany the images attempt to reflect the conversations we had and the children we met. As you read them you will start to see what we saw, that while every child and family is very distinctive there are consistent themes that emerge; unconditional love, living in the moment, empathy and compassion. What astounded us as we travelled was how these are some of humanity’s highest ideals and that these children are the teachers of these values. As one parent put it; “he will teach us more than we can ever hope to teach him.”
Our hope is for you the reader is to see the value, potential and beauty in these children. As humans we are all different, we all have strengths and attributes that can be celebrated. There is no such thing as perfect yet we are obsessed by it. Chasing an illusion while missing what is right in front of us.
Disability is not a deficit within the person, but shows up the deficits in our culture and society that does not fully accept, encourage and celebrate humanity, no matter what it looks like. The unique and distinctive abilities of this amazing group of children can act as an inspiration for all of us, to encourage each other.
Then we noticed this extended into supermarkets and anywhere there were electric sliding doors. It was as if she had an electromagnetic sensitivity that was unique to her. We started saying she had super powers as a lighthearted way to describe this phenomenon. We soon realised that her entire character, the things she was teaching us and those around her were very profound. Her strength and bravery in extremely tough medical situations, the way she evoked a depth of love in people that they hadn’t experienced before. Her fragility and her pure joy disarmed people and drew them in. Even down to how she got round - scooting on her back on the floor. These things made her unique, distinctly Evie, and we referred to them as “Super Powers” by now they were no longer lighthearted words, but incredibly real.
“Super Powers” became a way for us to describe Evie in a positive manner when people asked “what’s wrong with her?” We were constantly faced with the medical reality of Evie’s condition and the “Super Power” mentality helped balance the deficit language often reached for when describing disability. This in turn helped to bring out Evie’s best and helped others to see it too. The specific words “Super Powers” are not as important as adopting the attitude of looking for and celebrating the good, the beautiful and the moment.
We are very grateful to have enjoyed 2 ½ years with our daughter. All the doctors, nurses, ambulance staff and therapists involved in Evie’s care did a wonderful job of helping her to survive and to thrive, allowing her to reveal her incredible character.
THE DREAM
The idea for this book was to meet and photograph other children with chromosomal and genetic conditions and discover their Super Powers. It has been a magnificent honour to travel New Zealand meeting ordinary families being made extraordinary through the journeys their children are taking them on.
We’ve done our best to fill the pages of the Super Power Baby Project with children as their parents’ see them. The words that accompany the images attempt to reflect the conversations we had and the children we met. As you read them you will start to see what we saw, that while every child and family is very distinctive there are consistent themes that emerge; unconditional love, living in the moment, empathy and compassion. What astounded us as we travelled was how these are some of humanity’s highest ideals and that these children are the teachers of these values. As one parent put it; “he will teach us more than we can ever hope to teach him.”
Our hope is for you the reader is to see the value, potential and beauty in these children. As humans we are all different, we all have strengths and attributes that can be celebrated. There is no such thing as perfect yet we are obsessed by it. Chasing an illusion while missing what is right in front of us.
Disability is not a deficit within the person, but shows up the deficits in our culture and society that does not fully accept, encourage and celebrate humanity, no matter what it looks like. The unique and distinctive abilities of this amazing group of children can act as an inspiration for all of us, to encourage each other.