The doctor said ‘she won’t do anything normal children do’ #100days100stories

Micheala first shared her story with us in March 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

Micheala was a 19-year-old city worker when she became pregnant unexpectedly with Venice. At 14 months Venice was diagnosed with cerebral palsy and the specialist told Micheala her daughter would never walk, run or dance. Now 13, Venice walks freely and loves to street-dance. In the lead up to Mother’s Day, Micheala talks about her and Venice’s journey.

Micheala and Venice together on a couch
Micheala and 13-year-old Venice

When Venice was born it was quite a tough time, I mean I was just 20. I was working for the stock exchange and I loved my job, I was earning lots of money, back then there were lots of bonuses.

Venice came early at 27 weeks, and she was in breech. She stayed in the incubator for three months. She had two blood transfusions and a little bit of jaundice, so she was under the lights for a while. Seeing Venice in the incubator was really tough. She was just so tiny.

Diagnosis

My cousin’s son has got cerebral palsy, and one day I came to my cousin’s house to collect Venice and he said, ‘Mick, I think you should get her checked out’. The day came when we had to have this meeting at the hospital, and her dad never made it – it was just me. This specialist said ‘I’ve looked at your daughter and she’s got spastic diplegia’. I said ‘what’s that?’ and he said ‘basically it’s called cerebral palsy and she won’t walk, ever, and she won’t dance, she won’t run, she won’t do anything that normal children do.’ I just cried and cried.

When V got diagnosed I had a choice to make, which was, be a city girl or be the mum that has to support this child. So I thought ‘that’s it now’ – I put work down and now it’s all about Venice.

First steps

She got her first splint at about two or three and she’d say ‘oh mum they’re hurting’ because they would rub her calf muscle. And she still wasn’t taking steps and I used to get a lot of questions at this time from other mums, like ‘ooo why can’t she walk?’

We went to a family wedding when Venice was about three. She was still in her buggy and we were having a family picture. She looked at all the other kids – they were running around – and she looked up at my mum and said ‘Nanna I just want to walk, I want to run’ and my mum just started crying and she said ‘you will Venice, you will’. And she did, she started walking at four, with the help of physio.

Leg operation

When Venice was about eight, her foot did something that we’d never seen before – it literally curled up. That’s when we made the big decision to have an operation – it was Venice’s decision also. That operation has got her to where she is today, being able to get around more freely.

They gave her about eight cuts to her left leg, a few cuts to her tendon, cuts to her calf, cuts to the bridge of her foot, cuts to the top of the foot, and the toe where it had just curled up, to correct the bone. After that there was six to eight week recovery, home with the Zimmer frame – literally a Zimmer frame – like what an elderly person would use – and a caste.

The doctor said to Venice ‘no pressure, you don’t have to go back to school, you can heal at home.’ And she said ‘no’ – she wanted to go back to school. Underneath that caste there were so many stitches – to think about it now, it turns my stomach. Any time the caste got bashed by accident, it was just tears.

Hopes for Venice’s future

Venice smiling
13-year-old Venice has cerebral palsy

I hope Venice continues to push herself and break the barriers, and not be ashamed, or feel uncomfortable. Probably the most valuable thing I want for her is to be independent and not be afraid. I’m sure I will worry if she comes home at 18 and says, ‘Mum everyone’s booking a girly holiday’. But I think the more independent she becomes, the most I’ll be able to let her do what she wants to do. But it’s still quite scary to think that I’ll have to let her go someday, just to be.

Scope’s helpline

Scope’s helpline provides information, advice and support on cerebral palsy and disability issues for disabled people, their families, carers and professionals.

Find out more about Scope’s 100 Days, 100 Stories campaign, and how to get involved.