Raising a Superhero {I wasn’t prepared!}


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….

Grayson the Superhero

About Innocent Charms Chats

Kara Janelle, Plus Size Blogging Mama. Vintage Lover, Interiors Obsessed, Chair Crazed, Collector of Much remembering to Smile as it is the 2nd best thing you can do with your mouth.

  • Fi

    I wish I had answers! I wish I had a magic wand or the knowledge to make it all easier. I don’t – but I have my ears for listening and arms for hugging. You are all incredibly strong and you WILL get through this. Together. As the amazing superhero family that you are. Xx

  • EllaRalph

    I know I am terrible for commenting but I am still reading – I am just so heartbroken to read this 🙁 As a parent, I can’t even imagine what it must be like for you all going through this. I hope you have good support around you. Stay strong!! I am thinking of you, though we’ve only met a few times and life has a habit of running away with you so my blogging has pretty much taken a backseat recently. I am still finding time to read! Bells x

    As an aside – I love the new blog layout. Very clean, right up my street 🙂 x

  • Catherine Doran

    I’m so sorry to be reading this post Kara … I can only imagine how heartbreaking that appointment, and the news it contained, must be for you all. What I do know is this … you & Ashley are doing your VERY best for Grayson and that will never change. Stay strong and you know you have lots of listening ears on here if and when you need them xxxx

  • Oh poor Grayson. It’s such a heart breaking post. I just can’t imagine the way you must feel. Keep strong!

  • Oh Kara, I’m so sorry that you’re having to write this. I’m heartbroken for you and Ashley. I can’t imagine what pain you are going through trying to do the best thing by Grayson with that news. Much love xx

  • Xxxxxx

  • Oh hon, I wish I had the answers, I wish I could help or do something, anything. It’s so unfair. Sending you all my love and hugs x

  • Kelly (Everyday Joy)

    I’m so sorry to hear you have had such devastating news. What a beautiful little boy you have. It is clear through your writing that he is blessed to have you both as parents.

  • Kara

    I am so sorry to read this, I can understand your heartbreak. Grayson is such a lucky boy to have your family surrounding him with your love. If it’s any consolation my friends little boy George has a feeding tube and it’s the best thing they ever did as his reflux is almost completely gone. Good Luck and maybe Grayson will surprise everyone like he has done already!

  • Oh my goodness. Ive tears in my eyes and my heart is breaking for you. Life is so unfair. Fingers crossed it is as the previous comment says it could be xx

  • Goblin Child

    Oh, oh Kara. I’m heartbroken for you. I just – I wish that I could make it better, for you and for Grayson. I’m so sorry for the both of you, he’s such a beautiful boy and it just isn’t fair. xx

  • Sending you guys lots of love. I can’t imagine how you must be feeling. Life can be the most challenging and heart wrenching thing at times, I wish I knew what to say to help xxx

  • mummydaddyme

    Oh Kara this is heartbreaking. I knew that you had had a bad appointment but I didn’t realise you had written about it, I am a little behind on reading posts. I cannot even begin to imagine how you must be feeling. I am utterly heartbroken for you both. Kara, I am always here if you need me, I know that you have a lot of friends, but know that I am there for you. x