How it happened
You want your children to be perfect. They are perfect. When you get the news that there is a problem and one that can’t be fixed, your heartaches – another cliché that came about because it is so true. How you wish you held the power to take away the pain.
I’m really glad that my child doesn’t have a really serious condition, that for the most part, just knowing it exists means that when a problem occurs we can relieve the symptoms, even if we can’t take away their cause.
A random faulty gene that has made its way through our family probably for generations without ever having caused anyone else a problem, when all of a sudden it does cause a problem for one person. It isn’t a recessive gene, so it doesn't take another copy to make its presence felt.
I’d heard the complaints of pain for months on end. Each time it could be explained away by something – growing out of shoes, stiffness from playing more sport than usual, not able to run as fast any more because fitness is declining.
I asked our doctor at a number of appointments, only to be told it was probably nothing and the same reasons I’d used to myself being used to tell me nothing more needed to be done.
Then I found my child crying in pain saying it was pain that wouldn't go away any more. We went to a specialist. WHAM. Why did we not go before? There is no excuse really. Instead of justifying and finding reasons, I should have just listened. Instead of saying my child was accident prone, I should have listened.
What happens from here
Nothing much. We wait and see, we monitor and check for degeneration, we use modern medicine and technology to alleviate pain and discomfort and prevent future pain and discomfort as much as possible. We comfort and give reassurance. My child has come to terms with things very quickly and is still a happy child who asked the doctor questions, made sure of understanding and is confident that life will go on as usual with some minor adjustments now and maybe some more in the future.
Being able to talk to my friends has been a huge help. Friends who have given a smile and quietly let me know they’re there, friends who've brightened us up with jokes and fun. Friends who have had to deal with hard to swallow news about their children when they became one of the “other” people that these things happen to, friends who themselves live with incurable conditions that ebb and flow between no symptoms and mild symptoms and patches of more serious times.
Lack of support
Being told that conditions get invented so people can make money, being told it is all about being gullible, being told to spend a fortune on placebo options, being told to pray, being told to stop making a mountain out of a molehill. Well, I suppose that is all part of it too.
Have you had to cope with bad news about your child’s health?
Disclaimer: The views of columnists published on Parent24 are their own and therefore do not necessarily represent the views of Parent24.