Advice

To the Parents of a Child with Chronic Illness, Here’s What You Need to Know

Life is like a giant lotto and the same goes when you embark upon creating a family. It’s an exciting and uncertain time. Most of us know that there is a risk of things going wrong, but thousands of perfectly healthy children are born every year, why would yours be any different?

When the scans come back with the all-clear and you’ve hit the “safe zone,” it’s smooth sailing until D-Day. And once that baby is in your arms, you’re home and hosed, right? Or are you?

Sometimes that’s not the case. Sometimes things go wrong, and sometimes children are born with conditions that the best scans in the world won’t pick up.

That was our reality and as a result, I’ve spent a fair amount of time in the hospital with our now adult son who was born with a chronic illness.

To the parents of a child with chronic illness, you are not alone. 

Throughout these years, I’ve met a lot of parents going through some heartbreaking stuff and most times, I’d be in the ‘parent room’ making myself a cup of coffee when I would meet fellow hospital parents.

The parent room is like a prison yard where, by the time you’ve run into the same people for a couple of days, one of you inevitably ends up asking, “So… what are you in for?”

To the parents of a child with chronic illness, you are stronger than you think. 

Some of the parents I’ve met didn’t know what was wrong with their children. Their exhaustion and anxiety were palpable, with worry strewn across their faces as they downloaded their stories in the moments between toasting bread and dipping tea bags. These moments and their stories have given me a deeper appreciation for the simplest things in life, and I was often left in awe of their resilience.

Child with chronic illness
Source: Adobe Stock

Other parents I’ve met are frequent fliers, like me, supporting their children with chronic illnesses.

We are lifelong members of a club that we didn’t want to join.

We share the commonalities of having wandered the same wards and passages.

We share the gratefulness for the brilliant care our children receive, as well as the frustrations of finding car parks and being woken by beeping machines.

We long for time to pass quickly and for the treatment to work.

We count down the days until we can go home, knowing that we’ll be back again at some point in time doing it all again.

To the parents of a child with chronic illness, you’re allowed to be overwhelmed. 

The shock of receiving a diagnosis leads to a whirlwind of emotions. Fear and anger, sadness, and grief – parents must navigate a rollercoaster while providing the best care for their child. It also requires constant attention to medical appointments, treatments, medications, and potential emergencies.

The stress of this continuous vigilance can take a toll on parents’ mental well-being, not to mention the strain it can cause on relationships.

Tips for parents dealing with a chronic illness diagnosis 

Find support 

It’s so important as parents to connect with others who are going through the same thing. I remember sitting in a waiting room, exchanging empathic looks with other mums as we all waited for our turn in the doctor’s office. Through these smiles of recognisance, friendships bloomed and those connections have helped me get through some of the toughest times of my life.

As much as friends and family are fabulously supportive and understanding, it’s the mums I met in the Doctor’s waiting room who really “got it”. I never have to explain the backstory of my son’s condition, the science, or the words I use. I never feel like I should stop talking, or that I am boring them.

I don’t feel melodramatic or stupid or a burden. The whole reason we connected was because we can hear each other and see ourselves in each other, as we help each other navigate our way through a predictably unpredictable disease. Find your tribe, and search for others, online or in person. You aren’t alone.

Don’t give in to guilt

Another important tip that I have learned from being a mum of a child with a chronic illness is to ditch the guilt. Chuck it away and BURN it. You didn’t do anything wrong and as the famous saying goes “Sometimes, shit happens”.

Make time for YOU

Easier said than done, but find someone you trust to care for your child and take a break. You MUST fill your cup to be able to sustain the demands of caring for a sick child.

Educate yourself

Knowledge is empowering and helps build your confidence to advocate for your child. The really good doctors know that there isn’t anyone more ‘in the know’ about their child’s condition than their parent or main caregiver. If times are tough and you need extra support, seek professional counseling or therapy that will help teach you strategies and support your individual needs.

And remember, when you think you have the script down, life likes to throw in some plot twists. Hang on tight, and as hard as some days may be, savour and enjoy the good times.

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Avatar of Melissa Smith

Melissa has a passion for women’s issues, their rights, interests and the challenges they face, especially as mothers. She was living in the city when she met her farmer husband and so began her real life “Farmer Wants a Wife” series in regional South Australia, currently in season 20. Her professional background is in human services, however her passion is writing and creating content for the podcast that she co-hosts, called The 40’s Project.

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