Wednesday, October 3, 2012

Following our heart.

This is Tynesha Rose. She'll be 6 years old this coming January and her top five favourite things in the world are: her mum and dad, her peeps (everyone else who hangs out with her), pens, stickers and colours.

Tynesha is the adopted daughter of my aunt and uncle and she is just about one of the funniest and sweetest little girls in the world. She is resilient and so very brave. She contracted meningitis when she was born, which led to cerebral palsy and her prognosis was pretty grim. In spite of this she continually progressed further than we ever expected. She can talk, run, dance, sing and work an iPad like it's nobody's business. Unfortunately though, things have gotten much harder for T this year and she has spent every night from new years until the middle of September in hospital. We now know she also has a rare genetic disorder called atypical NKH and this amongst other things has meant that her stomach and bowels no longer work. She is 'fed' directly into her veins and is on a pretty insane amount of pain relief, yet amazingly still wants to sing 'Lean Back' with me and shake it in her crib.

It's been a hard road for her parents basically living in various different hospitals, and once she left Auckland to get ready to return home, Richard and I knew we needed to do the same. We wanted to be able to spend as much time with her as we possibly could as well lend a hand with her care.

It was a super quick decision (we decided we'd do it and left within a couple of weeks) and that definitely spun me out a little (a lot) bit. I've been given leave from work until February of next year and Richard resigned from Harvest. We're crossing our fingers that we'll have proper internet by tomorrow. It's been a bit of an adjustment from the busy of Auckland but we're started to settle in and are enjoying having lambs as our neighbours.

Talk soon, friends.

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