Dear everyone who has ever told me that they understand: I appreciate the gesture, I do.

It is hard to explain to those of you who are lucky enough to have healthy children.

The moment you find out you are going to become a parent, something, somewhere inside you changes. You immediately, yes immediately, imagine a ‘mini’ you running about the place. Will it be a boy or a girl? Will they have my eyes or my partners? Will they laugh like me? These questions flood into your mind as you soon as the doctor confirms,that there is indeed a tiny person growing inside you.

Yes there are circumstances where it’s not always good timing or maybe you are in fact single, it can be daunting, even with that, late at night, these questions tend to flow through your mind, willingly or not.
When your belly grows, everyone from your own parents to strangers in the street have an opinion ,”Oh look, I’d say it’s a girl, it’s all about how you carry it” or “As long as it’s healthy, who cares if it’s a boy or girl”.
You dream bigger and bigger as your expanding belly starts to jump, kick and move. The future,suddenly is full of what this baby might do, might be, who they might look like and so on and so on. You can’t help that. Those feelings of expectation are completely normal. You worry too. You worry about the baby,’what if’s’, then you start doubting your own ability. But, but you know, deep down, your baby is going to be just fine and so are you.

Most parents,will be handed a healthy happy baby after hours of hard labour. They will hold this ideal little person and fall deeper in love with it. They will be whiteness to a miracle,(they may not even be aware of it) they will be bursting with pride looking at this little human they both created. Many will be so overwhelmed they will cry. If you’ve never experienced giving birth or your partner giving birth,it is hard to understand, not hard to imagine but hard to understand.

Just as hard to understand if your child is healthy, running playing laughing, it is hard to understand those whose children are not healthy, not running, not playing and unable to laugh.Yes, you as a parent of a healthy child can imagine but you can never ever understand. You cannot understand what it is like to be told that your child is terminally ill, even if your own child has a disability, you still cannot fully understand. You most certainly, cannot understand this if you have never held a child of your own in your arms.

So from a mother, whose child is ill; whose child cannot do things for himself, whose child will always depend on her, whose child is fighting an incurable condition daily~ STOP.

Stop telling me you understand when I say things that make you uncomfortable. Just stop. Stop telling me it will all be ok. Stop. Just listen. That’s all. It’s not easy, but just listen.

Please remember that there is ‘ability’ within all ‘disabilities’; every parent who has a child with a disability, will tell you what that child does really well, so what if she is 10 and can now colour using two different crayons…those parents are whiteness to a different kind of miracle and this time they are fully aware of it.

Don’t pretend you understand what it is like to have a child battling an illness or a child with a disability; when you don’t. You can’t understand, you can imagine; even then you won’t even come close so STOP. Stop saying those things to us, just listen.

Believe me, we know, we know you mean well, we also know you thank God, that is not happening to your child; which is perfectly OK, that is OK. We would never wish our lives or our children’s battles on any other family~ just please stop saying you understand.

Thank you.


Leave a Reply

Your email address will not be published. Required fields are marked *

Keep up with Ethan
Get great contents delivered straight to your inbox as they are published,
just a click away,
Sign Up Now.
Email address
First Name
Last Name