As far as Megan Firster and her family knew, their baby boy was a healthy baby. “There were no indications otherwise”, says Megan. “He was just an incredibly relaxed and ‘chill’ little boy”.
I was very apprehensive when I left Leo at the house that first night, but when we come to Hummingbird House Leo and the rest of us are welcomed warmly, it always feels a lot like I am leaving him in the care of close friends or family.
When he was a few weeks old, he was admitted to the hospital with feeding issues. It was then that they realised there was more going on. Leo was always developmentally delayed, however it was when he was 9 months old, that he really started to regress.
Leo was diagnosed with Epileptic Encephalopathy, a severe brain disorder which in his case has caused severe disability and intractable epilepsy. “His condition is life limiting but to what extent we really don’t know at this point”, explains Megan.
Leo and his family enjoy staying at Hummingbird House. Their favourite aspect is being able to switch off mentally.
“Being a single parent of a very special, but my very complex little man means I never truly relax, even when I am sleeping , as we share a room so I can keep a close eye on him. He has many appointments and therapies, medications to be administered, feeds to be given, seizures to be recorded and that really just scrapes the surface of our daily life. I feel when he is at Hummingbird House he is in capable, caring hands.
When Leo is being cared for by the team at Hummingbird House, It gives my brain permission to think about something other than him for a short while as I know and trust that someone else is there for that period of time. It is so nice to just be able to spend time with him as his Mum too, and not as his nurse. I suffer from bi-polar disorder and it can be very hard to focus on your own self care when you have a child with high needs so this time away is also quite vital to my own mental health.”
Leo’s siblings are older teenagers and due to their busy work/study schedules they aren’t always able to stay with Leo when they are at Hummingbird House. “There have been some visits where we have all been together as a family, and they have been wonderful. During one of our stays, we sat up with blankets and popcorn on the rooftop one evening and watched Coraline. Leo was brought up for a while to join us and it was so special to spend that time together.”
Leo’s family have had so many truly memorable times at Hummingbird House it is very hard to pick one that stands out – but the pool at Hummingbird House holds some special memories for Megan too. “We have all been in the pool which is fantastic as all my kids love the water. Hydrotherapy time in the pool would probably be one of his favourite activities. Leo has very low tone and can’t sit unsupported, so I can only assume that feeling of weightlessness in water is very relaxing for him as he often ‘blisses out’ or even sometimes falls asleep when he is in there.”
Coming to Hummingbird House has also meant Leo’s brother and sister haven’t missed out on time or attention from their mum, when it is most needed by them. “Last year, Leo’s sister graduated from high school and had her formal – a very important week for her. Having Hummingbird House be able to provide a short stay break for Leo that week allowed me to focus on her and enjoy that really special time in her life without worrying about how I was going to juggle everything and how Leo was going to be properly cared for.”
When asked what Megan would like everyone to know about Leo, she doesn’t hesitate. “Leo is such a mellow little guy. I often tell people that he is the easiest and the most difficult child to care for at the same time. He loves to lay around, with toys or tv or without, he is quite happy to chill wherever he is. He loves music (his tastes are broad, and he loves both Nickelback and Lah-Lahs). The team at Hummingbird House often play him some songs while he is in the Acheeva chair or lying in the lounge room.”
It’s not just music that Leo loves at Hummingbird House, but also the art therapy. “He does love to do art with Jo, the Art Therapist. He has made some beautiful pictures during our stays.”
What matters most to Megan and her family is not the qualification of the person caring for her son – but the intention and care they bring to the role behind it. “When Leo was under one, there were very few people I would let care for him in my absence. It might seem strange but my only criteria was that they love him. I knew that was the only way to make sure he received a level of care similar to what I gave him. This was very restricting and meant that it was mainly only family or close friends that I could leave him with but even now to some extent this still applies. I was very apprehensive when I left Leo at the house that first night, but when we come to Hummingbird House Leo and the rest of us are welcomed warmly, it always feels a lot like I am leaving him in the care of close friends or family. It is hard to quantify but it is based on a feeling or vibe I get from the place and the wonderful people there.”
For Megan, it’s the care that extends beyond the child in care. It is extended to the rest of her family members. “That means so much to me personally. There is always someone there willing to lend an ear or a shoulder to a struggling parent or sibling, and on more than one occasion I have had need of this.”