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.
Top Comments
My friends daughter was diagnosed with cancer (she survived and is doing well) and i was honest with my friend. I said "i dont know what to say" she said it was the best thing anyone had said to her that day. And she said she just needed someone to listen. So i did. The sad part is a lot of her other friends just ghosted her. And after it was all said and done a few of them awkwardly tried to come back. But she was having none of that. She said "if you cant be here in the bad times you cant be here in the good." A few apologized and she let them back in but the majority silently went away.
This list is very contradictory: call but don't call too much, ask questions but not too many. Offer to come and help but don't make a nuisance of yourself. It's like treading on eggshells and it's no wonder people feel awkward and don't know what to do. I had a very premmie baby and for my friends and family to visit for a chat was enough.