Hear from our family ambassador Kirsty Murray through our regular blog series as she prepares to take on our Great Wall of China Trek! #AcornsChinaTrek
Since having Ella I have met so many superheroes and I am not talking about the ones in capes at Disneyland (although I have met a few of those too!). I’m talking about the real superheroes I come across every day, the ones most people won’t even notice or see, the ones that have more strength than any comic book hero.
I am of course talking about the children, family and staff of Acorns. Unless you have been part of this unique world you will have no idea of the things these people go through on a daily basis and how tough they really are.
No two children that use Acorns are the same, a few may have the same condition but their symptoms and challenges always vary but the one thing they all have in common is how hard they fight. Ella would have multiple seizures a day and I was once told that the energy she used in a single seizure was equal to the energy used to run a marathon! She fought infection after infection and watching her go through all of this showed me that I could never physically put myself through what she was enduring on a daily basis. She was my superhero.
Then there are the families! The parents I have met along this journey are incredible and the siblings are all doting, loving and truly understanding. They all have incredible strength, dedication and energy. Despite having sleepless nights having been up to suction, reposition, medicate or just to watch their children to ensure they are safe, they power through. They are still up to take their other children to school, go to multiple appointments, still get the housework done and make sure they do everything they can to get the most from their child whilst continuing to be a partner, parent, friend and hopefully trying to find time to be themselves. I can never say I am tired again because unless you are trying to do all this and regularly getting less than 4 hours sleep a night you have no idea how hard it is. To those that have lost a piece of you – the strength you require to carry on when all you want to do is give up is immense. The hard days when something tiny hits you like a wrecking ball but you carry on like a hero. And while I may have hung up my cape I live in awe of those still wearing theirs.
However, to me the staff at Acorns are also heroes. They are more than staff, they become friends and have the strength to pick me up when needed. They are there 24/7 whenever I have needed them. There is no limit to the help and support they provide. They do so much more than respite and palliative care. They have helped me obtain medical equipment, prepared charity referrals for funding, supported us to have a family Christmas and take Ella to Disney. They have introduced me to some of my closest friends and are always there for me if I need some emotional support and someone to talk to. They always go above and beyond to ensure me and my family had anything we needed to make the most of Ella’s life, they were there with me at the end and they were they to help me give Ella the send-off she deserves. We have cried and laughed together, they are amazing people who are unbelievably friendly and welcoming and who choose to do this every day.
So, I am doing this challenge for all the superheroes out there – you are all incredible!