When your child is born with what turns out to be an undiagnosed condition it’s a lonely, scary, fill-it-up-with-your-own-fears place to be. At the beginning you googleandgoogleandgoogle. You scare yourself witless with the conditions, syndromes it might be. G and I would do this secretly, not wanting to scare the other and it would only be days later that we might discuss what we’d found. Gently, tentatively, willing the other to disagree. To take away that gut-wrenching, stomach-falling panic. You find yourself doing deals with life. Could it please please not be this. And if it’s not that it needs not to be the other as well.
Testsafterrtestsaftertests are done to knock these potential life paths down one by one. For every test, there is a period of stress laden waiting. Followed by relief till the next one. Till you come to…. Nothing. And you are released into a world of disbelief. What do you mean they can’t tell me what’s wrong? Someone can always tell me what’s wrong. This is how life is. But not this time. We all know, we all see, that Alex is not developing as you would typically expect, but nothing in his scans, his genetic make up, his very physical being can tell us what. He is a mystery.
He is #undiagnosed.
Trying to explain this to people can be very very hard. The answer to ‘What’s wrong with him?’ can be very long-winded… it can be quite tiring… it can throw up thoughts I don’t want to think of and people… well, they hate an information vacuum. Please don’t try to diagnose him - to fix him - for me. Please think, just for a second, how this makes me feel. It puts me on the defensive immediately. We have all the professionals we need. We have asked all the people who have made a career out of this.
They don’t know.
You, after having just met me cannot know. Instead, ask me what his problems are, what his limitations are… ask me what makes him laugh. See my little boy. The future scares me. Right now he is the healthiest of boys. We’ve steered clear of A&E for over a year now and that bout of chicken pox? He rode it out no bother. There is growing immunity. But no diagnosis… who knows where he is headed?
In my darkest hours I wonder if I will outlive him. And I can’t tell you if that is better or worse than his outliving me.
So we remember to enjoy moments. Just in case. We joke that our children are at the forefront of medical discovery. That they are re-writing the rule books. They are.
Alex is on the DDD study (which delves further into their DNA than ever before) and has been for two and a half years. No diagnosis. And those that have received one are maybe one of a handful in the world. But they are a beginning. They will help the parents of the children who come behind us.
SWAN UK banded us together with all the other parents on our path. Gathered us in to show us we weren’t alone. That it wasn’t just us. It’s quite hard to explain what SWAN does. They don’t give us money. They aren’t trying to find a cure. But they educate, help join the dots.
They work with medical professionals to help them learn and understand what it is like to have an undiagnosed child. How to work with parents. How to talk to parents.
SWAN UK send balloons to the children when they are in hospital. To show them they aren’t alone. And thanks to social media they give the parents a forum to chat, to compare… to laugh at the some time ridiculousness of it all.
To celebrate those inchstones.
To make good friends.
That togetherness makes us all stronger, makes us all more confident, makes us happier.
My son is #undiagnosed 6000 children are born every year in the uk #undiagnosed So many of us wish we had found SWAN sooner.
Our family found them by chance conversation. And we are a brighter, cheerier, more banded together family unit because of it.
Undiagnosed Awareness day helps us wave to more parents, much sooner. Please spread the word.
You can find out more about SWAN UK here: http://undiagnosed.org.uk/