THE Connect and Participate Expo, on March 24, is basically an “O-Week” for adults, an interactive, fun event with live music, demonstrations and activities, says event organiser Nadia McGuire. It’s an all-inclusive, all-ability, all-age, family-friendly […]
THE desire to support families with seriously ill children while honouring their daughter Maya is the driving force behind Tash and Mark Maguire’s respite home, Maya’s Rest.
Tash says they moved out of Canberra and created Maya’s Rest at their purpose-built family home in Yass for families with seriously ill children and those who have lost a child.
In the past two years she says they have supported more than 20 families.
“We check in and say ‘hi’ in the morning then make sure we’re out during the day and give them space, but we’re here if they want to talk, and offer any support we can,” she says.
“I’ve had people say: ‘My husband won’t open up’, but then he’s there at the kitchen bench chatting away. We want to be there for people because we know how it feels, that it can be so isolating.
“At the same time we don’t know the right way for everyone and so staying here doesn’t come with advice!”
Tash has started a Chuffed crowdfunding campaign, which runs until December 12, with the aim to raise enough money to get started on plans to build a two-bedroom respite cottage on the property.
Tash says it’s a poignant time for them, as it would be Maya’s sixth birthday this week, with the campaign starting on the four-year anniversary of Maya’s passing on November 27.
Building the extra cottage will allow Maya’s Rest to accept more families and to be able to give guests increased space and privacy, Tash says.
“At the moment we’re able to take one family at a time in specially-designed rooms in our home, offering mini breaks every few weeks, but we’d love to provide respite on a full-time basis,” says Tash.
“Ultimately, our dream would be for the two-bedroom cottage to be built with support and materials from the community, bringing everyone together in some way.”
Maya’s Rest provides all meals, peaceful views, activities for kids, quiet space and total time out, says Tash. The idea was inspired by their time at children’s hospice Bear Cottage in Manly, Sydney.
“It’s an amazing place that just allowed us to completely rest and gather our strength for the next part of the journey,” says Tash.
“The minute we got there, I knew we had to do something like this for people near Canberra, to create this feeling of support. Maya was still with us at that stage, but I already knew it would be called Maya’s Rest.
“It’s also important to me that it be free, because we know it’s hard. We had no income and nearly lost our house, and we know that asking people to pay anything is just more stress.”
Tash says Maya’s Rest has been an incredible experience for her eight-year-old daughter Amelia.
“I’m conscious of Amelia getting involved with the families and I’m often encouraging her to let them have time to themselves, but I’m finding I may need to be led by the families on that,” she says.
“One mum said it was great to see how well-adjusted Amelia was and that it gave her hope that her other kids would be okay.
“Often it’s helpful for them all to play together and Amelia loves connecting with the children who come through.”
Tash says that Maya was born in 2011 with a lump on her neck and within 10 days of her birth she had a diagnosis of a rare cancer called rhabdomyosarcoma and was embarking on chemotherapy.
“We were just in shock I think, but we took it day by day,” says Tash.
“We didn’t have a choice and it’s hard when people say you’re amazing, you’re so strong, because anyone would do it. You just do what you have to do. We went with it, we had hope and we had to keep it together for ourselves, for Maya and our daughter Amelia.
“And Maya was such a happy kid. We worked out she spent a third of her life in hospital, but she stayed so joyful and really enjoyed life, that it made us know she could handle more treatment.
“We hoped she could be the miracle. But at the end we knew when she couldn’t take any more as well.”
Maya passed away a few days before her second birthday in November 2013, and Tash says that she and her husband Mark wanted to give back to other families who were going through what they had experienced.
“We know these families are on a hard journey and we want to make it easier for them for a few days. We’ll take care of the meals and everything else so they can relax and have time together.”
Tash says one of the greatest gifts for them is being able to share Maya, talk about her and create meaning out of her short life.
“It’s our hope that this will continue for a long time, and that Maya can keep giving forever,” she says.
Donate from $6 to Maya’s Rest at chuffed.org/project/mayas-rest. The campaign runs until December 12.