I am not sure I should still be surprised by Doctors appointments for Grayson, you would think 6 and half years on I would know my Superhero is always striving to be different, to create little mountains for us to climb, but this time I am struggling, this time I really wasn’t prepared for what I would be told.
I thought this appointment would be like many more we do each month, a waste of time update, we were seeing neuro science after all (deal with his ventilation) and they are still waiting to book him in for major investigations, so I thought they would have no feedback.
I was so so wrong, why couldn’t I be right?????
It is all very complicated and technical, so I am going to simplyfy, basically Grayson has severe Gastro Reflux Disease, he is highly medicated actually above the dose for his size but it is not working, he is struggling, he is in pain, he is suffering – well that’s what they can in their best guess decide.
So we have been told they are going to take a basic right from our superhero, he will no longer be able to eat orally.
Can you imagine if someone told you that, you would never be able to eat again, never taste chocolate, enjoy a sandwich, have that yummy pizza.
It is torture isn’t it ? Lets be honest, no matter fat or thin, on a healthy living plan or just eating what you like we all enjoy food, there is something that gets you happy and excited.
My little boy is not like others, he has very simple pleasures, little he enjoys, he doesn’t go out to play, hates toys (unless they are to chew), he doesn’t play on an iPad, or go to parties with his friends, his pleasures are a nice new chew toy, Mickey Mouse on the TV and eating.
We are taking away one of his pleasures and replacing it with a tube in his stomach and liquid feed.
What sort of parent does this ?
This is not the only part, with this comes a series of major surgeries, stomach operations, fundoplication, invasive tests, massive amounts of pain and weeks in hospital away from family in London in a hospital room.
This is not supposed to be happening, he only started to eat real food just over a year ago, a skill we thought was impossible, we are now going to be taking it away.
How will we sit at the dinner table and stop him picking up something to eat ? Why would I want to ?
He doesn’t understand, he has no idea we are making these decisions, no idea what the road ahead has for us all.
What if it doesn’t work? What if they are wrong ? The result will be made, as you see Grayson had also confirmed in this appointment that he no longer has any normal brain function, in fact they said he has a completely abnormal brain, but that upset Ashley, using the term abnormal for his precious son, I was just to stunned I did not really hear abnormal, I could not stop hearing he will never develop past his current mental age, in fact he could regress further, how can he regress further he has so little already ?
So if we put in that feeding tube and take away a skill, he will loose it, if he doesn’t repeat it everyday, it will be gone.
What are we doing ? How do we know if we are making the right decisions ? Why does our little boy have to be labelled abnormal ? Why did it have to get worse ? He is already dealing with so much, why can he not have good news ? Why can he not say Mummy ? Why can he not run ? Why can he not be allowed to eat ?
Please whoever you are tell me….