Raising a chronically ill child is hard work. It requires the on switch to be constantly clicked as you watch and wait for the next thing to happen.
Hannah is very much our curveball kid. At 5 days old she was diagnosed with a congenital heart condition called Tetralogy of Fallot. She was hospitalised for a great deal of her first year, has had 2 open heart surgeries, 1 closed heart surgery and was fed with a tube for 18 months. 4 years ago chronic eczema suddenly showed up and with that came infection, multiple specialists, medications, hospital stays. In her 7 years of life she has seen more doctors than the rest of us put together. Recently a diagnosis of aspergers added an even greater complexity.
Does that define her? Oh hell no! She is feisty, sassy, strong, funny, bright as a button, a great gymnast, master of funny walks, best bottom wiggler in the world and has a heart the size of Australia. She adores animals, loves shopkins, hates sitting still, wont eat most fruits and never ever ever stops talking. For the most part around treatments and doctors she is a normal little girl who thoroughly relishes her role as painful little sister.
But as her mum I dont get the chance to breathe out often. Life is a daily balancing act and I border on hyper vigilance. When my gut yells at me I have learnt to follow it and quickly.
This week saw my pocket rocket admitted suddenly to hospital for a serious infection. It was scary how quickly it ravaged her body. It was scarier to realize how many doctors are not equipped to manage the care of a child like her. This admission proved to everyone that her complex care needs to properly coordinated with a group of highly specialist doctors experienced with chronic illness. How grateful am I for those who are willing to work hard to fit her jigsaw puzzle together, give her quality of life and attempt to keep her safe and healthy. It is a huge job.
We dont have a great deal of practical family support. When Hannah is admitted to hospital it is usually sudden and always a period of high stress. Usually I am incoherent. Most of the time I have to bolt off and leave the planning up to everyone else. With 2 other children in different schools, 3 animals, a shift worker husband, multiple sporting commitments for the kids and a business it is no easy task. We plan with no idea how long we will be away, sometimes it even requires me to be interstate for surgical treatment and follow up.
This week was stressful. Infections scare the life out of me. They are her number one risk. And that risk is high. Too high. Insanely high. We are staring down the barrel of needing a heart surgery with a child who has constant infection. It is terrifying. So to say I lose my shizz is putting it mildly. Our children’s hospital is an hour away and I just picked up and left.
But here is the amazing thing. My community is the best out there. I have assembled this tribe of women, all of whom are insanely busy in their own lives, all of whom are fighting their own battles which are huge and all of whom without a second thought say “dont worry – we’ve got this for you”. Kids were taken in and cared for better than I ever could, meals were cooked, washing was done, hugs were given, phone calls, texts, funny jokes, thoughtful gifts put a smile on her face, food was literally dropped off to me on the way to and from appointments, school drop offs and pick ups. This meant Peter could still go to work and know we everything was taken care of, important because many people forget how scared he gets too.
So now I sit back with overwhelming gratitude and a full heart. I know I ask a lot, and more often than I want to. I know I cant always reciprocate and I know that no matter what they dont care. They have the same end game as i do which is about getting Hannah home safely. Each and every time without fail they rise up and do what is necessary. Over the years I have asked so many times and with no end in sight their support doesnt ever waiver at all. That is what sisterhood means to me and I am proud to be in one of the best.
Daisy was very happy to see her girl back home again!
Not sure there are ever appropriate words, thank you seems irrelevant. One day I will return the favour to a family in the same situation as us. One day I will pay it forward and give that same heart bursting feeling I get daily.
The world is still a good place, it takes moments like ours to fully realise it