Exploring the beach with Gone Crabbing clothing

Exploring the beach with Gone Crabbing clothing

I have spoken about Gone Crabbing clothing on my blog and social media before and it was only last week that I mentioned them in my Summer 2019 clothing picks  because we have been firm fans of the brand for a good few years now. But why do we love it so much?!

Continue reading “Exploring the beach with Gone Crabbing clothing”

So you have a sibling with Down Syndrome? – Starter guide to T21

So you have a sibling with Down Syndrome? – Starter guide to T21

So you have a sibling with Down Syndrome? Or maybe you’re due one? or maybe you’re just intrigued to know what it is like?

Now I’m not going to sugar coat this because I’m not Willy Wonka and this isn’t a pity party so get ready for the facts.

Already I have made this sound like this is going to be a serious post, trust me it’s not.

  1. People will believe that your sibling is/will be a burden on you. Some people do seem to think that they will hold you back and some how stop you from achieving and distract you. In my case Rory hasn’t done this if anything he has helped me achieve!
  2. You’ll be left with your sibling when your parents peg it (die if aren’t aware of what that means!) This one always makes me laugh a little inside, I didn’t realise that as soon as my parents are gone then I don’t have any interacting with any of my other siblings. I mean I’m going to be left with all of them not just Rory!
  3. This one is slightly controversial. Rory has led me to have great opportunities. He’s like my golden ticket. I mean think about it! If I were to go to Disney land with any other sibling I would have to queue of hours, I take Rory and jackpot, front of the line!
  4. You will still go through that sibling stage of fighting and annoying each other! Yes, just because your sibling has an extra chromosome doesn’t mean they wont want to wind you up or have a play fight.
  5. They are tough cookies, not push overs and if you don’t watch it they will have a fight with you. Rory has proved his to me. He can be in a mood where all he wants to do is annoy me. By this I mean he will try to beat me up all day.
  6. They will inspire you. Sometime in a good way other times in a bad way. They might inspire you to write, like me or they might inspire you to punch someone in the face for using the dreaded ‘R’ word.
  7. One minute you will be fighting then next you will be defending your sibling from online trolls like some sort of T21 Kray twin.
  8. They will cost you a fortune. Every time I go into a shop I feel like Rory is looking at me with his puppy eyes saying ‘please buy me this, I’m your favourite.’ Often then not the item ends up in my shopping basket.

Seriously though, moments might be hard. I’ve seen Rory when he has been so ill and when she had his stoma bag but I forget that because I am there when he achieves. A happy moment over rides a bad one. The support groups are amazing and the friends you will make are even better. Your sibling may show you part of life you never thought you would see. I’ve been in the houses of parliament and protested because of my little warrior brother. Not something I ever thought I would do. I’ve won a journalism award because of something I wrote about Rory. I was never interested in writing until Rory came along and I found blogging as a way to get my voice out there!
Siblings with Down Syndrome are not a burden but more a key into a part of life we never thought we would see.

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Still You – My Mencap Journalism Awards winning entry 

Still You – My Mencap Journalism Awards winning entry 

In your first 12 weeks of life no one questioned you or your abilities. No one wondered if you would ever be different. In those weeks before that appointment, you were still you. People didn’t avoid us or judge. The community was still as strong as ever. Until that room, that sonographer, that scan. That morning you were still you by the evening you were someone else.

In those next few weeks the word spread. The questions started and the judging started. While you were growing hair and fingernails we were dodging the unwanted questions surrounding your survival and existents. We didn’t notice, we were blind to it but the community began to fade into nothing. Those words spoken by that Sonographer ‘your baby has a thick Nuchal fold’ seemed to echo around our once tight knit community. We were completely unware that while one group of people left another was waiting for us. One that understood, one that didn’t judge, one where you could just be you. Time passed, people faded, information multiplied. While our lives prepared to change, yours was only just beginning.

As your family, we awaited your arrival, we waited and we waited until here you were. Still you. You were 3 days old when you faced your biggest hurdle. 5 long weeks passed before you, our little baby was allowed home. After facing so many hurdles and challenges, I still don’t know 2 years on how, a tiny fragile baby overcame so much. But then again you are stronger than everyone thinks. The next 2 years up until now have been overwhelming for us, but you have taken it in your stride. We have become part of movement, a whole new, unexpected door has been open and we now have the abilities and motivation that could move mountains all because you are still you.

Our community has the good, the bad and the ugly. The good; the ones that support and love you. The bad; the ones that try but still don’t know how to react to you then the ugly; The ones that see you as how I like to put it, a 2-headed monster. They refuse to accept you for one reason or another but in their world, you don’t fit. but would you want to?

Some people will accept you, some refuse to and we will never find out why. In our family, you are the glue that sticks us together strong that anything else ever could. Your still so small and Brother you have moved mountains just with your smile, with your strength and with your courage. With support, you will achieve more than most people. I will always tell you this; Just be you and never ever hold back. Be whatever you want to be. You have nothing to lose and everything to gain because whatever happens you will always still be you. You have nothing to stop you, the world is your oyster and the skies are the limit.

Some of the community may question you, some may even doubt you. But Brother, never listen to them. Yes, you are different. When has it ever been ‘cool’ to be the same. You are different, but you are everything we as a family have ever wanted and more. Watching you grow, develop and achieve so much is an honour. You have done more in your 2 short years of life than some people achieve in a whole lifetime. Having you as a Brother has made my life change. Everyone around you has changed. The people we have met, the places we go, the opportunities we have all because of you. All of this just because you are still you.

We have met families and made friends with people from all over the world. A picture of you and your awareness message has also gone all over the globe. You are so small and look so much different to the boy we all imagined when that Sonographer, in that room, said those words. But because of that diagnosis, you are you and wouldn’t have you any other way. Weither it is 1 or 100 people that doubt you. Never listen to them. As your family, we value and support you and we will always have you back. The community don’t need to be sorry, they don’t even need to understand if they don’t want to.

Thinking back, while we felt a million emotions, you were still you. While people asked, what felt like a million questions, you were still you. While doctors write a million words about you, you are still you.

But Brother, we got this. We’ve got you. To other people you are unanswered questions. To Nan and Grandad, you are a Grandson. To Mum and Dad, you are a son. To your Niece and unborn Niece, you are an uncle. To me and your other siblings, you are a Brother. We are your family, your supporters and you are our future. We love you from your blonde hair to your chubby cheeks to your palm crease to your amazing personality to your extra chromosome.

All because you are still you.

You can also find my entry on the Mencap website: https://www.mencap.org.uk/blog/still-you

Working with Asda and Dr hiliary Jones! 

Working with Asda and Dr hiliary Jones! 

Sometimes I can find it so hard to keep things a secret, more so when they are very exciting! So for the a long time I’ve been wanting to tell you all about Cleo’s work with Asda and Dr hiliary Jones but finally I can tell you everything!

Cleo was picked to be in a new series of short videos for Asdas Little Angels website to help parents with some of the most popular questions that regularly get asked. Cleo was picked to be in the short video for bathtime (very fitting considering the hair!)

We had to travel down to the shoot in London for the day. It went amazingly well considering this is Cleo’s first time doing anything like this!

To celebrate these short videos I was invited (baby and child free) to the world-famous Ivy for lunch. It was heaven!

Thank you to Asda and to Dr Hiliary Jones and to Myriad PR for the amazing experience!

Here is the video: Baby bath time tips with Dr hiliary Jones

When we nearly lost you…

When we nearly lost you…

I thought I would take this opportunity to talk about when Rory was born and how we nearly lost him.

*Disclaimer – I am not trying to say that the NHS are rubbish as it is amazing that we have the NHS here in the UK, I’m just telling the story of what happened to Rory*

We will start where it all began..

Rory’s first scan:

I won’t name the hospital so I will call them ‘Hospital 1’

My parents visited Hospital 1 for their 12 week scan, it was obviously meant to be a lovely experience. But when the sonographer noticed Rory had a thicker Nuchal Fold than a baby should have it seemed being a professional went out of the window. Having a thick nuchal fold is a hard maker of a baby having Down Syndrome. The words from the sonographer were ‘I don’t know what i would do if i had a Downs baby’ and ‘I did wonder when you were going to start crying.’  To me these comments are appalling and shouldn’t be coming from someone working in a hospital. All information my parents were given was out of date and nothing was really explained to them. They were just left to find things out for themselves.

Rory’s Birth:

Even though mum had a 1 in 5 chance they still were fine with her going to her due date. FB_IMG_1506000142004Babies with Down Syndrome are normally born early and the risk of misscarrying or stillbirth is very high, statistics show it can be as high a 30% die before they are born. Despite this they booked mum to be induced on her due date then went and cancelled it anyway. In a stroke of luck mum did in fact go in to labour in the middle of the night on her due date anyway. Yet again though Hospital 1 put Rory’s life at risk when they sent mum home after her waters had broken, we like 25 miles away from the hospital and mum’s labours are always quick. The Hospital were well aware that Rory could  potentially have Down Syndrome but still thought it the right thing to do. Mum went back up there and Rory was born in the morning. Unfortunately that’s not where it ended though, the midwives then avoided the room and they took FB_IMG_1506000148990Rory away to be checked over, for him only to then be gone 6 hours before telling my parents what had happened to him. Rory was very poorly and in NICU, he hadn’t done his first poo and in turn his bowls got back up and infected causing him to get sepsis. Rory was then transferred to another hospital (We will call this one Hospital 2′ where thankfully he was met by a brilliant team of doctors

Rory’s Hirschsprung Disease:

After arriving at Hospital 2 Rory was soon diagnosed with a life threatening conditionFB_IMG_1506000144484 called Hirschsprung Disease. This is a congenital condition meaning it develops while your baby is growing in the womb. Hirschsrpung is where the nerves in the bowl don’t develop, this can cause poo to build up and cause a blockage. Luckily at Hospital 2 there was an amazing surgeon who successfully operated on Rory for 8 hours to give him a stoma. Hospital 2 saved Rory’s life. Hospital 1 potentially put Rory’s life at risk. Hirschsprung can be detected on an ultrasound from around 14 weeks, he had many scans so why did it get missed?

Rory had his stoma reversed so he no longer has one at Hospital 2 in August 2015. He sees a lot of consultants at both hospitals and we are so grateful for the work the NHS do but we will never be forgotten that Rory nearly lost his life because the hospital missed something.

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I’m working with yourlegalfriend.com they specialise in medical negligence claims. Claims against the NHS don’t happen very often and personally we didn’t want to claim but i wanted people to know that You Legal Friend will be there for you if you were to ever need them.

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*This is a sponsored post for Your Legal Friend*