the new normal

when you start a family, you have this preconceived notion of what life is going to be like. i admit that i’d never really thought about having a child with special needs, you never think that it would happen to you and your child. i think alot of people are still really really scared about the idea of raising a child with a genetic disorder, there’s this huge stigma attached to these kids that they’re “doomed” and you’ll be ushered away to live your life in a corner somewhere.

but i want to write this to let you know that today we are doing okay.

when you are given a diagnosis like Rett Syndrome, the grieving period never ends. it’s what they call ‘chronic sadness’. eventually you find your new normal (living with this chronic sadness), and you go with it.

so while it might not be ‘ideal’ to be sourcing for paediatric wheelchairs, testing out the newest range of one-way straws, deciding the best way to manage seizures, checking that your child hasn’t passed out and checking whether you can fit an eye-gaze board into your handbag – there’s still a tonne of good to be experienced in this world and when it’s good, it’s REALLY GOOD.

CourtOctober 16th, 2012 at 8:11 pm

K works with the special needs is at our local high school. He loves them! These kids are so innocent and full of joy for life. They haven’t become ‘jaded’ by life the way the rest of us seem to be… They live everyday as if it is a new one, forgetting silly quarrels they had the day before, quick to forgive and quick to laugh…

Yes, it might not be the way you thought your life would be, but beautiful souls like Jovie & the kids k works with have so much to teach us and show us about what really is important in life.


Wanda Lynn (shedigs)October 18th, 2012 at 3:05 am

Posts like this make me happy! I tend to always be very pessimistic about everything, it’s so good to see someone who is the opposite. It totally lifts me up and I want to thank you for that!

I am glad that you all are finding your new normal. My son was diagnosed with an asd 3 years ago and I feel like we haven’t found our “place” yet. You really are an inspiration Tracey!

PS: Totally random and maybe a little bit awkward (or pointless) but I live on a street called Tracey St. ha ha Yeah I am a geek.

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