As told by Harrison’s mum, Tania.
Our journey began in September 2010 where we would soon learn about the world of rare lung diseases and living with a medically complex child. The vision of parenthood that everyone has was not our reality and instead we were living in hospital more than out, and training on equipment and finding ways to cope with a child attached to tubes and oxygen.
Like anything in life, you learn to adapt and find your new normal. A child on tubes poses such challenges, like the tube connector getting caught under furniture, but you block up the corners, scale the house for snags and get on with it.
You can swim in a pool with the connector in your mouth and child in a ring or in your arms, and for ease of getting around, the best lung mum hack is to buy yourself a hydration backpack from somewhere like Kmart or Kathmandu, and use it to carry the tank around. Worried about the tube getting caught around your child at night? A solution is to tape it down their back with paper tape, or thread underneath their pyjamas.
With each milestone comes its own set of challenges, the first being that when you have oxygen flowing you can’t have birthday candles so we went to Ikea and bought battery operated candles and there was our new tradition. No matter what the equipment or challenge you face, you can always lean on the Young Lungs Facebook group for advice and guidance. What is a fit for one person may not suit you so always weigh up the pro’s and con’s, and most importantly, never feel alone as some of us have been doing this a long time and we all have days where we feel overwhelmed, but you will get through it…one breath at a time.