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”.
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 nine months old, that he really started to regress.
Leo was diagnosed with Epileptic Encephalopathy, a severe brain disorder which in his case caused severe disability and intractable epilepsy. “His condition was life-limiting but to what extent we really didn’t know at that point,” explains Megan.
Leo and his family enjoyed staying at Hummingbird House. Their favourite aspect was being able to switch off mentally.
Being a single parent of a very special, but very complex little man meant I never truly relaxed, even when I was sleeping, as we shared a room so I could keep a close eye on him. He had many appointments and therapies, medications to be administered, feeds to be given, seizures to be recorded and that really just scraped the surface of our daily life. I felt when he was at Hummingbird House he was in capable, caring hands.
“When Leo was being cared for by the team at Hummingbird House, it gave my brain permission to think about something other than him for a short while, as I knew and trusted that someone else was there for that period of time. It was 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 was also quite vital to my own mental health.”
Leo’s siblings are older teenagers and due to their busy work/study schedules they weren’t always able to stay with Leo when they were at Hummingbird House. “There were some visits where we were all together as a family, and they were 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 had so many truly memorable times at Hummingbird House so it is hard to pick one that stood out – but the pool at Hummingbird House holds some special memories for Megan.
“We have all been in the pool which is fantastic as all my kids love the water. Hydrotherapy time in the pool was probably one of his favourite activities. Leo had very low tone and couldn’t sit unsupported, so I can only assume that feeling of weightlessness in the water was very relaxing for him as he often ‘blissed out’ or even sometimes fell asleep when he was in there.”
Coming to Hummingbird House also meant Leo’s siblings didn’t missed out on time or attention from their mum, when it is was most needed by them. “A few year’s ago, my eldest graduated from high school and had their formal – a very important week in any teen’s life. Having Hummingbird House was able to provide a short stay break for Leo that week, which allowed me to focus on them and enjoy that really special time in their 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 was such a mellow little guy. I often tell people that he was the easiest and the most difficult child to care for at the same time. He loved to lay around, with toys or tv or without, he was quite happy to chill wherever he was. He loved music (his tastes were broad, he loved both Nickelback and Lah-Lahs Big Live Band). The team at Hummingbird House often played him some songs while he was in the Acheeva chair or lying in the lounge room.”
It’s not just music that Leo loved at Hummingbird House, but also art therapy. “He loved to do art with Jo, the Art Therapist. He made some beautiful pictures during our stays.”
What mattered most to Megan and her family was not the qualification of the person that cared for her son – but the intention and care they brought 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 loved 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. I was very apprehensive when I left Leo at the house that first night, but when we came to Hummingbird House Leo and the rest of us were welcomed warmly, it always felt like I was leaving him in the care of close friends or family. It is hard to quantify – but it was based on a feeling or vibe I got from the place and the wonderful people there.”
For Megan, the care at Hummingbird House extended beyond the child in care. It was extended to the rest of her family members.
“That meant so much to me personally. There was always someone there willing to lend an ear or a shoulder to a struggling parent or sibling, and on more than one occasion I had need of this.”
For Megan, the respite and short break stays that Hummingbird House offer were invaluable, but it wasn’t until their very last stay there with Leo that she really understood fully, how important the place is.
“Leo was a very healthy child for one with such complex needs. He never got sick, but he had been having some issues with his breathing for a few months and at the end of May 2019 he was rushed to the emergency department.
After a number of days in hospital and things looking grim, Hummingbird House asked us if we would like to come to them instead. I couldn’t think of anywhere else I would rather have been at that time, than the place that had become like a second home to us, in the company of people who had become like family, with the medical knowledge of the team supporting us, and the hospital just a phone call away.”
During their last stay at the House the team organised photo shoots, casts of Leo’s hands and feet, fingerprint jewellery and a handprint painting that all of Megan’s children did together.
I remember feeling a bit silly at the time, because I wasn’t ready to face the fact that he was dying. These tangible memories of him are treasured and cherished by me now. I was never short of an ear, or a hug, or a cuppa in the weeks that we were there, and Leo was in a place where he felt comfortable and could do all the things he loved one last time.
Megan and Leo’s family and friends were warmly welcomed to Hummingbird House during that time, and on 14 June 2019 Leo took his last breath in Megan’s arms.
“It was then that I realised how truly grateful I was to have a place like Hummingbird House, for my baby boy to spend his final days. I didn’t have to be alone at a time I really wanted company, but if I wanted space I could have that too.”
The Hummingbird Suite also allowed Megan the time and space she needed to say goodbye to Leo, which meant the world to her.
“Everyone there just got it. The kitchen wheeled my food to me so I didn’t have to face questions from other families. The cleaners asked if it was okay to strip his bed. Staff would come in late at night with a hot chocolate if they saw I was awake and thought I might need a chat. It’s these things that make Hummingbird House a home to me rather than a medical facility.”
Leo left Hummingbird House six days after he passed, and his funeral was nine days after that. Megan remained at the House until she was ready to return home.
“The staff helped me plan what no parent should ever have to, and I’m not sure how I would have managed it without their support and assistance. I told one of the staff that Hummingbird House was the ‘gold standard’ for death. The care, the respect and love they show at the worst time of a family’s life is the cornerstone of hospice care and they are masters of it.”