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.