April is HIE awareness month – and one of the daily themes is about Capturing HOPE.
Connor experienced a lack of oxygen sometime during delivery – it was nobody’s fault – honestly it happens more than you think. For Connor, the brain damage resulted in Cerebral Palsy that affects motor control of his body.
Hope for HIE is a nonprofit that brings families together and works with the medical community to improve the lives of those who suddenly are traveling this unexpected journey. It’s a journey that is completely unknown because all brain injuries are different and all recovery’s are different – and whew the unknown is a scary place to be.
But…in the unknown there is also hope. And it’s not the ‘focused hope’ of a particular outcome that is not in your control: “I hope he’ll eat by mouth or walk or be accepted and included” but instead ‘intrinsic hope’ of knowing it will all be okay: “Even if he can’t eat walk or talk – I hope to find a way to support him so he can work and play and love as fiercely as he wants to – I hope to find communities and foster belonging so he knows and builds on his strengths instead of wallowing in his differences”. Intrinsic hope allows you to fight against the fear of the unknown because your mindset is yours – your actions are yours.
To me, hope is the blackbird singing in the dead of night. Helping us take these broken wings and learn to fly – helping us take these sunken eyes and learn to see…because all our life we are only waiting for this moment to be free…to become the blackbird flying into the light of the dark black night.
