Being a Superhero’s Mummy

Written by InnocentCharmsChats. Posted in 2015, grayson, Special needs

Your smile is the most precious, your heart beats so hard and I am glad that I get to experience it all.

special needs

Mother’s Day gorgeous-ness

My everyday with Grayson is similar to my everyday with my other babies, similar to yours I am sure – actually in some ways honestly it is easier, he never shouts back at me, never screams and cries, never whines about what I make him for Dinner.

Not everything about being a Mum to Grayson is a negative, it is hard to write that at times, especially these last few weeks when at 1.30am I am standing outside my front door chucking sick covered bedding in the wheelie bin and quietly sobbing in my dressing gown, I am not angry though, I am sad for my little boy, sad that he suffers when he really is the sweetest child on this planet – that is a serious statement but I fully believe it.

But with all the negativity that has come from having to be on a ventilator and severe epilepsy there have been positives that are just so outstanding.

My Superhero has finally seen me again, this must sound crazy, he is not blind, but when it came to me he just didn’t see me, I existed in terms of someone who changed his nappy or put Mickey Mouse on the TV but I hadn’t really seen his eyes in years or felt his touch in so long I had forgotten – but with all this pain he is changing, he sees me, he looks at me and smiles, the most amazing smile. He cuddles me, like actually nestles into my armpit and touches my hand, he allows me to hold his face, to kiss his lips. I don’t think words really can make you understand the importance of this. I feel like he knows I am his Mummy again, that I am there and he is willing to share his life with me.

special needs

Best Friends for Life

Why am I telling you all this ? Well other than to be smug as it is my super proud Mummy moment, but it is cause Katie of Mummy, Daddy, Me got me thinking, she made a statement that her and Mr E did not feel they were old enough to have a kid of 4, not as an age thing but mentality wise and I totally got this. The Hubby and I did the same thing only a few weeks ago, we were both in our late twenties/early thirties when Grayson was born, it never crossed my mind that we were not mature enough, then life threw us a curve ball and Grayson and our lives became a whirlwind of hospital stays, loosing him and starting a new life. It wasn’t till this past year I realised what life had really given us, we hadn’t had time to stop and think and I can not believe that I have been trusted with my children’s care, to make them, to caress them into amazingly well-adjusted human beings, me someone who is always tittering with my mental health worries, me who is dealing with a child with such complex needs on hours sleep a night.

But one thing I am sure of, I am certainly not a great Mummy, I am by no means probably the best for my children, but what I am is so deeply in LOVE with all 3 of my babies and I do know that no matter what happens I will forever be by all my kids sides but my Superhero I will forever help you put on that cape!

If you are interested in my life as a Mummy to Grayson and have ever wanted to ask a Question but been unsure, please do that below as I am starting a series of Q&A VLOGS on how Grayson and I work together.

What does the future hold ? I am so unsure now thanks to Legoalnd Discovery Centre.

Written by InnocentCharmsChats. Posted in 2015, grayson, Special needs

I was so upset when I came across and article on facebook this week.

Legoland Discovery Centre in Manchester are refusing entry to disabled adults. This might seem like an odd statement but these aren’t just disabled adults these are adults who have mental ages of young children. But the rules are clear.

Spokesperson for Legoland stated

Our policy not to permit entry to groups of adults, adult couples, or lone adults, regardless of circumstances, who are not accompanied by a child or children under the age of 16 is we believe therefore appropriate and the best way to constantly maintain a welcoming environment for our young visitors.

I have seen this policy at many attractions. to be honest until now I haven’t even taken much notice, but then again I don’t think I would, as I never expected an attraction take it so literal, Legoland are stopping adults with mental ages of 7 and 8 to enter and use the attraction. I understand policies have to be in place but can we not use common sense ?

Legoland clearly can’t and this was their response when questioned about the young man refused entry.

We make no apologies for this policy and believe it to be reasonable and appropriate, and one on which we make no exceptions.

As a blogging friend put it “I’m Gobsmacked, that there is a horrifying lack of humanity.” She then goes on to say in conversation “I only hope there’s been a miscommunication or accidental error of judgement that they’ll rapidly rectify.”

But at present Legoland are defending their actions by stating that they hold adult only evenings. But maybe this is where Legoland are educated incorrectly, because unfortunately although adults in the sense of the word when it comes to age, these men are still children.

I don’t normally try to get on my soapbox about Grayson, I never try to constantly shout and scream about all the inequalities he and us as a family face (and trust me there are many) but Legoland have angered me and even more they have honestly UPSET me a great deal.

It is the response from Legoland more than the initial refusal, I understand staff are made to enforce policies and I honestly thought that is what happened, then to read Legolands response was so disappointing, as a mother who knows one day THIS will be my reality I feel I have no choice but to share Legolands decision with you all.

Grayson at legoland

Grayson currently at 6 years old has a mental age of 1 year, we have been recently told it is looking unlikely Grayson will ever mentally get much older than he is now, Grayson enjoys simple pleasures, Mickey Mouse on TV, a nice simple music toy, a very basic day out, this will probably be the case when he is 6ft tall and 18 years old, he won’t work like his brother or sister, enjoy University, go on thrill seeking rides – so if places like Legoland start pushing policy so hard, without taking a second look what will others do ? What does life hold for Grayson and I, where shall we go, shall we be excluded from enjoying in “normal” places and activities, shall restaurants stop refusing entry ? Will local farm centres be the same ?

Life has such uncertainty for us as a family, I have no idea as he gets older if the abuse in the street shall get worse, how many more people will judge my superhero, but I really did not want to deal with places like Legoland Discovery Centre being so discriminative.

Legoland Windsor was a dreadful day out for us in the past, their policies there made it difficult for Grayson to enjoy the park at all, when I contacted them a few years ago about this they apologised and urged us to attend again stating they had made many changes. Addison has non stop talked of Legoland these past months after seeing an advert, once the weather was better it was going to be our 1st trip, but I honestly don’t know how I can support a company who deal with the disabled in such a way, so once again Addison has to go without due to having a brother with disabilities, this is not far!

What do you feel about the article ? I am open to all responses.


Elaine Lewis a mother of one of the men refused entry has started a petition against Legoland Discover Centre to allow entry if you wish to show your support.


Written by InnocentCharmsChats. Posted in 2014, grayson

I didn’t know what to name this post, as I really am at a loss.

Grayson sitting

I knew that things would become more difficult for Grayson as he got older, I knew medically more problems would probably occur, it is common with children with such profound disabilities, but we have been very lucky. He has not had many nasty medical issues, well not in comparison to children we know.

But it would seem that time has come, I feel shaky and frightened, but that will pass, it has to as I am the Mummy and we cannot show fear.

Grayson in the past 2 months has had some nasty problems, since starting to eat real food (WHICH IS HUGE – WHOOP WHOOP) he vomits a lot, mainly at night and he doesn’t even wake, thankfully as I sleep very little most times I have heard a little cough noise, I then know he is probably covered in sick. Thankfully he doesn’t seem to have aspirated any, thank god for him getting that bit stronger, if it had happened a year ago, well it doesn’t bear thinking about.

He has had some invasive tests this past month, which are a story in themselves, but it is looking positive that there are no major stomach problems, they have to culture some biopsies they took from inside his stomach (gross) to check for a superbug but they hope that shall be clear. So it points to very severe reflux, not the standard babies have, not like Deacon’s but on a really nasty scale, it could mean stopping him eating, oh how I hope not. Grayson, Ashley and I have worked tirelessly to get to this point, a point we never thought possible, I just pray we don’t have to stop him.

My little superhero works so hard and something gets thrown into making it hard, he really fights through, you can see he is struggling and in pain, but he says screw you I will enjoy my choc spread sandwich.

Now if only this was it, this is the easy bit, this is the bit I can cope with, can say ok, we shall fight as we have over and over.

But after years of me arguing, years of me seeing my little sociable/happy baby change overnight into a child so hidden from the world, years of saying something isn’t right, have come back to bite me in the arse. I had always prayed I was wrong, this just can’t happen to my little boy, he has had too much already.

I was wrong and right all at the same time.

Grayson during a sleep study to see how his apnea episodes were progressing (he has a rare nasty type, he stops breathing up to hundred times a night) it also became apparent that my fears were true and that our little boy has a very serious type of epilepsy, I really did not want to hear this, the phone call from his Neurologists stopped my breath, you think I would get used to it wouldn’t you but nope. Ashley stared at me, not sure what I was being told, I couldn’t listen to his doctor I just wanted to get off the phone and speak to Ashley, he always knows what to say to me to keep me sane.

It was decided meds needed to be started straight away, they are strong ones too, he would send a letter to our GP, there of course were side effects, ones that could be nasty, I know friends whose children take the meds and they hate it, it changes their whole personality, but most concerning for Grayson’s is a lack of appetite. We have fought that feeding tube for 3 years, please do not tell me this will be what breaks us.

As I told Ash his face sunk, we knew, but we didn’t, I am not sure that makes sense, Grayson mentally has changed so much, but we had always hoped we were wrong. They had told us we were wrong but now we aren’t. Now this is our new life, our new reality.

A reality were we have gone from 1 medication a day to over 10, they are for the better but what impact will they have on our little Superhero’s system.

We have been told this past 6 months that he could stop breathing at any time at night, we knew he would not tolerate the breathing equipment, but we have had to make the decision to try, to put him through more of what can only be described to him as hell, we know seizure could take him, we know that a chest infection could quickly now become Pneumonia again and that he can only go through that so many times without….

But we are not going to let any of those things happen, it won’t, I am his Mummy and I will not let it – screw you you evil diseases, you will not hurt my son, he is a GOD DAMN MIRACLE!

Grayson, I promise I shall make every day the best day you live, every day will be fun filled, shall have new adventures, we will fight together, Mummy shall cradle you every day, I shall be your everything, I will find a way to take you on new adventures, to visit fun places, no matter what, I will work every waking minute to provide these things for you, I will find a house where you can go out in the garden like you long for, I will find a car seat you fit in, I will feed you chocolate everyday even if that tube has to go in and when another of those seizures come I will stop whatever I am doing and cuddle your little body better.

You are my hero.

This post was written for me, for me to understand the news that has been given to me, reading a post over and over is my therapy, I am not sure why but it works, but I write this for all that love my baby, Grayson you are loved by so many, this year we are going to travel the country and meet the lovely people who send us love and support.

Most importantly I cannot say thanks enough to the team at Raising For Grayson, in less than a month some of them are completing a seriously scary task and are climbing Snowdon – please please please if you can help to support them in any way I would appreciate it, I have never been one to ask for money for Grayson, all our funday’s and events have always only donated a small amount to my Superhero and mainly went to other charities, I am not asking for your support to help Grayson but because these amazing ladies are doing this just because they are true angels, because Grayson touched their hearts without even being involved in their daily lives.

Thank you to all who love my Superhero, honestly it is with your support and that of a few select family members that as a family we keep going, our life is ours, we do not know any different, but we do know it isn’t the easiest.



Living Arrows {4th August 2014}

Written by InnocentCharmsChats. Posted in 2014, grayson

The only words needed is – MIRACLES CAN HAPPEN!


Do please check out the incredible photos in the #livingarrows project from I Heart Snapping.

One of the geniuses behind Living Arrows is the very cool and awesome Hayley of Shutterflies, who I have the pleasure to call a real life friend. The pictures she takes always make me smile, they are just so beautiful and I was very lucky to have her take some beauts of Deacon on his 1st Birthday – I am so going to get her to photo my superhero above one day.

living arrows
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