When a child comes face-to-face with disease, defects, or tragically even death, it’s the parents who fight. For their child. For their marriage. For themselves. Because let’s face it, if they don’t, who will? After the initial shock of a diagnosis (if they’re ‘fortunate’ enough to get one), they will inevitably learn to put their own needs second, in a somewhat foolhardy bid to keep it altogether.
The health outlook for the child is obviously paramount. But the fallout is far-reaching. There’s the physical and emotional toll on the parents. The mental anguish of having to watch a young child endure such hardship.
Then there’s the enormity of guilt and the enduring associated questions. Did we cause this? Are we (indirectly) responsible, through some kind of freakish genetic throwback? Did something happen during the pregnancy?
Add to that, there’s the drain and toll on other siblings. The marital stress. The career setbacks from constant medical interruptions. The commute to and from hospitals for appointments, tests and procedures. And the logistical juggle required to keep a family afloat.
For the last four years, my husband and I have had the misfortune of being regular visitors to our local children’s hospital. Our beautiful boy was born with respiratory and skeletal deformities, due to a suspected rare metabolic disorder. We’ve experienced firsthand the kindness of friends, family and complete strangers. Some made our journey so much easier.
However, to be perfectly honest, others made it so much harder. Never intentionally, of course. But put simply, many of our nearest and dearest just didn’t know how to support our son, or us, during our times of greatest need. Some went quiet, for fear of upsetting us (or perhaps themselves). Others were too intrusive. They pushed us for details we didn’t have. They pried to get clarity, when we too were confused. They offered us their own diagnosis and treatment advice.
Here’s what parents of high-need kids want you to know:
1. DON’T COMPARE
“Susan’s neighbours, friends child at school had that too” … “I know what you’re going through, I went through something similar with little Johnny” … “I saw a kid with that disease on A Current Affair and he ended up OK”.
While they might seem harmless and innocuous, these types of comments can downplay the seriousness of a medical complication. Other gems include: "he looks so well", "he'll be fine", or "at least your other kids are healthy".
Show a genuine interest. Remember key appointments and procedures. Educate yourself on the child's condition and the associated medical terminology. That way, you're less likely to accidentally offend or upset.
At the same time, don't feel you need to sugar-coat the situation. A parent of a sick child wants you to listen to their thoughts and fears. No matter how dark. Don't simplify or justify their concerns. And be mindful of complaining about trivial issues in your own life.
2. DON'T DIAGNOSE
I can't stress this one enough. In the case of many rare diseases, a diagnosis is never straight forward. Please don't try and offer medical insights.
In the case of our son, we still don't have a firm diagnosis, despite four years of exploitative procedures and whole genome mapping (a big deal). That makes well-meaning medical advice from friends and family even more infuriating. If the experts are stumped, we're not going to give too much weight to a Dr Google diagnosis.
3. DON'T IGNORE
Whatever you do, don't ignore the parents. And don't forget them. Silence is louder than misspoken words.
The absolute worst thing you can do is completely avoid a mum or dad with a sick child. Many of our friends did, later telling us that they "didn't know what to say". The physical and mental impost on parents is isolating enough.
Sometimes they might not reply to your phone calls and voice mail messages (texts are better) but please don't stop trying to make contact. And don't be offended if they can't meet up for coffee. Congratulate the parents on positive news and results, and remember key surgery dates and tests. And don't forget to ask them how they're doing.
4. DON'T IMPOSE
Practical offers of help are best. In many cases, parents have other children to herd around too. Offer to mind siblings or do the school run. Drop off frozen meals and light shopping. Send around a cleaner. Mow their lawns. Generally it's better to put one friend or family member in charge of volunteers. Don't believe they don't need anything. Visit ... but only if they want. Take caffeine, chocolate and fruit. And definitely don't overstay your welcome.
Sue talks about what it is like to be a parent of a very sick child and what people can do to make life a little bit better. (Post continues after audio.):
5. DON'T PROBE
Don't ask too many questions. Be guided by their conversation. It's a very fine line. Sometimes friends ask too many questions. Sometimes their line of questioning can be probing and insensitive. Let the parents control the depth, tone and pace of the dialogue. And if they say they're fine, know they probably aren't. And leave it there. They know you can't fix it.
It's not easy being a mum or dad at the best of times. But being the parent of a chronically ill child is a really tough gig. Sometimes there are no words or actions that can make their situation any better. But know that on those days your presence says it all.