I was born with congenital hydrocephalus, and had a shunt put in when I was less than 2 months old. I grew up with this condition being hidden from me, only uncovering parts of the puzzle over time as I grew up. At the point of diagnosis and intervention, I could not have spoken up for myself. But with the gift of hindsight, this is what I wish I could have said.
While it will hurt that you cannot intervene, please don’t try to fix me.
I know you wish I could run faster, draw pictures with a higher level of technical skill, and walk with my feet flat on the ground instead of tipping my toes. I wish I could do all these things, too.
But if you choose to try to fix me, through numerous extra operations, various physical therapies, essential oil rubs and even trying a diet-based intervention measure, you’ll be attempting the impossible. At present, hydrocephalus is treatable; that’s why you opted for the shunt. That gives me a chance to live as a regular mainstream child. Thank you. But it is not curable – this means your various intervention measures will be implemented in vain, and you will be disappointed when you realize this.
So don’t try to fix me! Instead, love me as any other parent would love their child.
Be honest with me about the details of my condition in an age-appropriate manner.
As I grow up, I will gradually realize that part of me is different from other kids. Yes, I know all of us are different in our own respective ways, but mine’s a little more noticeable when people observe me enough.
I note your good intentions by not telling me that I am different – perhaps it’s the fear that I would place a stigma on myself that you are guarding against. Or perhaps you are refraining from “labeling” me before society does.
But the difference between me and others’ conditions is this – they might have totally visible conditions, like cancer which usually manifests in hair loss, or a broken leg, validated by a cast. The visible nature of the condition leads people to have a degree of understanding. It is easier to understand and empathize with things we can see.
While I hope every day that my differences which are hidden on first sight might not be picked up, I still need to be prepared to handle the occasion if they do. I know you’re afraid I wouldn’t understand – and you’re right, because it will take time. Having said that, my peers will probably understand as little (or as much) as I do – that’s why we need to put this into age-appropriate vocabulary.
Please help me to help myself!
I’m giving you the benefit of the doubt that you don’t know how to explain such a complex condition to me, which is OK – not many people do. But that’s why we need to ask for help from others, or rely on our own creativity.
I wouldn’t limit your sources of help or your creativity, but I suggest something like this:
Tell me how when I was born there was too much water (cerebrospinal fluid) in my brain, like a cup filled with water that is about to overflow. Because it is trying so hard not to overflow, and my brain is trying to keep it all in, it hurts my brain. That’s why we need to help remove the water. If we have an overflowing cup, we drink the water. In this case, we put in a straw (shunt) so that it can divert the water (cerebrospinal fluid) out of the overflowing cup (my brain) into other spaces.