How do you explain why it’s important to be able to switch off and just be mum? How do you correct people who assume your daughter is sleeping? These are the questions Charli Flannery-McRae’s mum Louise regularly deals with. It is through friendships made at Hummingbird House that Louise is finding the answers.

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“Seeing kids running around playing hide and seek is what I love about this place.”

“Hummingbird House is our home away from home. In fact, Teddy (Charli’s brother) wants to live here. He is so impressed with the volunteer hairdresser that he’s decided that’s what he wants to be when he grows up. A hairdresser who lives at Hummingbird House!”

The opportunity for Louise to meet other parents and carers who understand the complexities and uncertainties of loving a child with a life-limiting condition cannot be underestimated. “Hummingbird House is a place where I can have adult conversation without worrying about having to explain myself or being concerned about frightening others about Charli’s future. I now have a friendship group who completely understand that when you accept an invitation to go somewhere, you may have to cancel at the last minute. ”

Two days after Louise learnt that her daughter’s condition is so rare that she is one of only 6 other children in the world, she was introduced to Hummingbird House. “We had spent 4 months in hospital, not being together as a family. I didn’t even know Hummingbird House existed, let alone what it meant for us. Then I came out, met the team and realised it was going to mean so much to us. We were able to reconnect as a family here. After so long in hospital, it was lovely to be together again.”

“Seeing kids running around playing hide and seek is what I love about this place. I love that the kids get their normal back.” Hummingbird House is also a place where families like Louise and Charli can gain support from other parents and carers. “Hummingbird House is this safety blanket for us. I don’t know what I would do without it.”

It’s when Louise comes to tell the world about Charli, that her love for her ‘social butterfly’ is obvious. “She will smile at you until you look at her. She may be non-verbal, but her facial expressions show that she loves everyone and anyone. She has made all of us better people. Charli has come into our lives for a reason; to teach us a life lesson. ”

When asked what matters most, Louise replies “accepting change. What matters this week, may not be important next week. Going with it. It’s about learning what is our new normal and going with it. As Charli determines it. Charli is writing her story, and as her mum I will do all I can to follow that story. That’s her gift to us.”