International Disability Day: celebrating achievements and milestones

Cerebral Palsy was certainly not something we knew much about before Maddy was born - we knew some friends who had CP, or had children with CP, but it was not a direct experience. In those first few scary days in the NICU, and even beyond, there was a lot of unknown, as well as "wait and see".

What we have learned is that CP is a helpful label to allow understanding of some of Maddy's challenges, but that it does not, nor will ever, define who she is as a person.

Maddy is cheeky, funny and laughs louder at her own jokes than anyone else's. She is a loving sister and a kind friend. She is not scared of bugs, but hates X-ray machines.

She works hard with her physio, OT, educator and speech therapists, and forms bonds very quickly and affectionately. We have been very fortunate that in a rural location we can have access to people who love working in paediatric therapy, and give joyfully of their energy and care.

Recently, we have taken our first "serious" foray into the world of disability equipment with the trial and then arrival of Maddy's new wheelchair. Our local team of physio, OT and equipment rep were invaluable in the process, which has been a challenging one as parents. It has been a balancing act - trying to give her freedom and independence while worrying about her safety. It's been challenging for us to face the attitudes of people wanting to stop and say how cute she is (which is certainly true), treating it like a toy, or the people who just walk in front of a 4 year old in charge of a joystick without paying attention. However, it has also been a time of joy - watching Maddy celebrate her freedom and independence has been wonderful, as well as letting her participate in the bright colours of her chair.

There will undoubtedly be challenges ahead - for Maddy learning about living with her Cerebral Palsy disability; for us as parents learning to let her experiment, take risks and move beyond the safety we offer. The milestones we measure are certainly different, as we are celebrating gains and achievements we previously did not measure. But they are celebrated with joy and excitement by our little family as we treasure the place Maddy fills, and the potential she has.