Motherhood – and indeed the deep caring for others that it symbolises – is a common, but ever unique experience. One of the most selfless and individual journeys we will ever undertake, rarely are we alone on our journey. For the company of others keeps us strong and amidst our different experiences, we find what unites us; find others reach out to us, and support us.
Nowhere was this more evident than at Foys Kirribilli on Friday 10 May, when a group of women connected to Inala came together. We were there to celebrate Mother’s Day, but the warmth and generosity that giving so selflessly embodies filled the room.
We were all enthralled as Di Robinson, mother to Nick who has been at Wandana for nearly five years, spoke of her parenting experience, her journey toward ensuring her son experiences a full and meaningful life, and her hopes and dreams for him, her family, as well as herself as a mother.
‘Nick has cerebral palsy and is severely physically and intellectually disabled. He is also a joy and a challenge and I wouldn’t have him any other way,’ she said, her love and pride shining through.
All children need champions, but as Di explained, ‘the reality for parents who have a child with a severe disability is that we are parenting for a lot longer.
‘I also have an 18-year-old son who is bright and talented and strong and independent. I am my 18-year-old son’s mum.
‘For Nicolas, my disabled son, I am his carer, his chef, his therapist. His nurse, his teacher, his maid. His taxi service, his personal shopper, his financial adviser and his advocate.
‘I am rarely ever just his mum,’ says Di stoically.
But, she admits, her body is telling her it’s had enough. ‘I’ve had spinal surgery, cervical epidural cortisone injections and many sprains and muscle tears as a result of the physical care that Nick requires.’
It is a situation many families find themselves in as their child living with disability grows into adulthood, but there also comes a time for their adult child to live a life of their own.
Anticipating this situation, about eight years ago, Di approached the agency responsible for funding support prior to the NDIS to request accommodation for Nick. ‘I did this much to the horror of my friends and family because I knew there would come a time when I would not be able to physically care for my son. I did this because I knew it could take ten years to find a suitable accommodation setting for him.
‘I did this because I wanted to be around to ensure he was in an environment that would look after Nick the way I knew he needed.’
But about 12 months ago, ‘things started to get a bit stressful at home,’ explains Di. Struggling with both her health and looking after Nick, she decided to actively pursue accommodation for him. Although some distance from home, Di was able to secure a vacancy for Nick in a group home that ‘looked great and promised amazing things,’ so she accepted the position.
Unfortunately, while she no longer had the physical burden of caring for Nick, ‘the emotional burden exploded.
‘Nick lost around 15 kilos, had a pressure sore that went unnoticed, issues with his wheelchair and other equipment, and he was very unhappy.
‘I was ready to bring him home.’
Then, at her lowest point, Di says she received a call from Inala – Nick had been offered a place in one of our group homes at Cherrybrook. ‘Of course, I accepted on the spot!’ says Di, her relief palpable.
Nick began the process of becoming familiar with his new home not long afterwards. ‘I watched the house parents interact with the other residents and they surprised me with their genuine care and gentle nature. I watched them talk to Nick in the same way, and I watched Nick’s easy responses and his quick acceptance of these new people in his life.
‘This is what I’ve been waiting for. A place that accepts Nick as he is. People who encourage and support him to be independent, to enjoy life.’
Like all mothers, Di says, ‘I will always worry about Nick, as I do with my 18-year-old, but I can now step back a bit, observe, and enjoy the new adventures he will have.
‘My challenge will be to learn how to be his mum, and let the work of caring for him fall to Inala’s carefully chosen staff.’
Enabling parents to fulfill this heartfelt desire, along with the desperate need in our community, is the reason behind Inala’s Accommodation Appeal, which all proceeds from our inaugural Mother’s Day lunch will go toward.
Our appeal will help us raise the $4.5 million required to build two purpose-designed homes in the Hills area of northern Sydney. This will provide opportunities for individuals living with disability to create a life of their own, to live in a home of their own, and to develop life skills and confidence.
Thank you to everyone who attended the lunch and supported the appeal through pledges and raffle tickets. We would also like to thank FOYS Kirribilli Restaurant, Mosman Rowers Club, Sportscraft, Clear Skincare Clinics, Jan Logan, Country Culture and MoetHennessy for donating such wonderful raffle prizes.
And finally, a very special thank you to Di for sharing her touching story with us all on the day. We are pleased to say that Nick has now moved in to his new home at Inala, and is communicating that he is not just enjoying it, he is using the word ‘happy’; which is exactly what we all wish for our children.