Parenting a child with chronic illness is not easy. But what about the child? There are issues kids with chronic illness face, like loneliness and social isolation.
When a young boy with a chronic kidney disease turned to the internet to cure his loneliness, he never expected the response to be so overwhelming!
Xiaoshitou is a five-year-old in Changchun, Jilin province, China, who suffers from nephrotic syndrome. The disease means his kidneys are damaged and as a result, the immune system breaks down.
The boy's 38-year-old father, Chu Bun, says Xiaoshitou doesn't fully understand his condition, but is aware he has to go to the hospital often and take pills regularly. Because of the hormone treatments, he weighs 35 kilograms but is only one metre tall.
"He also can't enroll in kindergarten and play with his peers for fear of infection," added the boy's father.
Diagnosed at 14 months old, Chu recognised that his son was withdrawn. "We noticed that he barely smiled and hid when strangers-showed up."
However, they came up with an innovative method to help Xiaoshitou socialise. They noticed he played on his mobile phone very often and even took videos of himself.
So the parents decided to upload some of his videos on the photo-sharing platform, Kuaishou, in 2017. His clips began going viral, and he gained many followers very quickly.
"Little Pebble" now has 980,000 followers on social media who highly anticipate new releases of updated content. Netizens leave encouraging messages whenever he posts a new video up.
However, despite Xiaoshitou's (or Little Pebble) success, is this what parenting a child with chronic illness should look like for all families in the same situation?
How to cope when parenting a child with chronic illness
Parenting a child with chronic illness is a hugely stressful time for both parent and the child. It can be disorienting and you might feel lost about what you should be doing. It's important to know that there isn't a right or wrong approach here since everyone copes differently.
Chronic illnesses are normally long-lasting and can be financially and emotionally taxing. Finding out which coping strategy works best for you will help you manage your emotions and practical considerations over the years.
Some things to consider include:
- Reaching out for social support among friends and families - asking for help is NOT a weakness!
- Read internet forums, blogs, and other online resources to understand how other people dealt with similar situations
- See a counsellor or similar therapy
- Find out about financial support
5 tips to help your child cope with a chronic illness
What makes Xiaoshitou's story so wholesome is that he was welcomed with open arms by netizens after he started streaming. But as we mentioned earlier, everyone is different. Your child might prefer to play outdoors instead or have different hobbies as they grow older.
What's important is to journey together with your child as you both help to manage their long-term condition. Here are five tips to help you with parenting a child with chronic illness.
- Speak honestly with your child about their illness in a way they can understand
- Talk with other important people involved in your child's life, such as teachers, parents of your child's friends and anyone who might be responsible for your child's wellbeing.
- As best as possible, encourage your child to keep up with everyday activities
- Recognise and respond to emotional distress as a result of the chronic illness
- As best as possible, allow your child to have a voice regarding her treatment
References: AsiaOne, China Daily
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