February 5, 2018

Caring for a child with a rare lung condition

Tania, mother of 7 year old Harrison who has an Interstitial Lung Disease

Being a parent of a child with a chronic lung disease is hard, so when you add ‘rare’ into the mix, life changes in so many ways. I write this looking at my son hooked up to high flow oxygen. Our journey has seen us sleep around 62 weeks in hospital. I have run through the doors of emergency with an unresponsive child on more than one occasion. I have had to hold my child down so doctors can insert feeding tubes or needles while he looks into my eyes with pure fear.

As a mother I am meant to protect my son but sometimes I feel so helpless. A seven year old typically has a cupboard full of toys but ours is filled with medical equipment and consumables needed for daily life. I have a stethoscope, can count respiratory rates and suction a nose – very different from the career I had as a marketing and national accounts manager – a career I gave up so I could focus on our child.

The isolation can be suffocating; there are no support groups at the hospital to go to as there is no one like you. The support networks of friends I once turned to fell away as they got tired of the declines to invitations. Strangers often don’t understand and think it is ok to stare, or even challenge us when we park in a disability parking space. Some people have even asked my child inappropriate questions such as if his condition is terminal.

Emotionally, you must remain strong. Never doubt your instinct. Fight for your child. Sometimes it feels like the world has walked out on you, but it’s important to never give up as it tests every facet of your life.

I was lucky to stumble upon a support group on social media for children with rare lung disease. This group of parents who I call my lung family, support each other and are working together to raise awareness about these rare lung conditions and to increase funding for research to help our children. We will never give up hope and we will fight, one breath at a time. Join the ChILD Australia Family Network Facebook group at: https://www.facebook.com/groups/807974212578314

Read Harrison’s story: lungfoundation.com.au/Harrison.

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