The “Minute-To-Minute” Life Caring For Children With Chronic Illness
Any parent of a child with chronic illness will tell you that it requires learning how to focus on the present.
New Zealand native Catherine McHaffie has learned this through some very difficult moments. She penned a first-person essay for New Zealand outlet Stuff about her “hour-to-hour, minute-to-minute life” caring for a two-year-old with chronic illness. McHaffie declined to cite the specific illness.
In 2016 alone, the little boy has been hospitalized seven times and been rushed to an after-hours medical center 11 times. This doesn’t include nine outpatient hospital appointments and 19 visits with their local doctor.
“On occasion, I have turned up to work on two hours of broken sleep, sometimes none at all, and my son’s father has driven home from work unable to recall the route he took to get there as he’s been awake since 2.30am,” wrote McHaffie. “But we cannot anticipate the end of our interrupted nights…that’s the problem with chronic illness: it’s chronic. Ongoing, maybe fleeting, but enduring.”
Despite their faithful efforts to visit every specialist possible, there is no known cure for their son’s chronic illness. However, they have managed to obtain medications that can reduce some of his symptoms during flare-ups and have greatly improved his overall quality of life.
All the treatments that help make things manageable mean that chronic illness does not define our child, just as…allergies and cancer don’t define my youngest son,” wrote McHaffie. “These children are, first and foremost, kids. They are children who happen to face a few more health challenges than many others, but they’re children all the same.”
McHaffie has also develop a truly special bond with her son in going through this together. She believes that his illness has strengthened his character and made her truly grateful for having him in the family.
I’d do anything to trade my son’s illnesses for something more peaceful and less nerve-wracking, but I wouldn’t trade my son for the world. He’s a delightful boy with a raucous demeanour and ambitious attitude that leaves me humbled he can be this way despite being put through the wringer, she wrote. “How lucky am I that I brought such a fighter into this world? Nothing phases him.”