On Saturday we headed up to Dalby forest in North Yorkshire for a lovely family walk with a twist, as it was also a chance to try out the latest App from The Forestery commission “Gruffalo Spotters“!

Whilst the sun was shining and we were looking forward to a lovely walk, the fact we were taking the ipad out just felt so weird to me and I wasn’t sure if I really liked that.

When I first heard about the App I thought it was a brilliant idea, but then the more I thought about it, I kinda felt like it defeated the object of taking your kids outside (to chase nature and get off screens). But it surprisingly worked well together and the kids loved it, and it made for a lot of family fun. Because in reality the Ipad only briefly came out about 5 times around the trail to spot the character whose prints we had found on the boards. It then brought to life the creature in a magical way that gave the forest a whole new feel for the kids, and as they watched the little performance on screen (but couldn’t see it in real life), it became a real imagination builder and fascinating for us all. The excitement fuelled them to run and discover who else was hiding in the deep dark wood..

We are not particularly an App kind of family, and our kids don’t have their own devices. In some ways that made this adventure all the more fun because they were allowed to use the Ipad and also had to share and work together too. Because it was something so different to our usual outdoor adventures, it was exciting for them and as I say magical too. It didn’t detract from the enjoyment of the outdoors and we still came away feeling refreshed and very muddy.

I would recommend you check it out soon at your local forest as being Gruffalo spotters is so much fun to do together and makes for a magical Gruffalo/forest adventure.

Watch our video to see more about it and how we got on.

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For years I have scrolled through my Facebook feed and loved the efforts of parents and kids in creating spectacular, ingenious and just lovely costumes for World Book Day. From comic books to classics, one off faves and  quirky childhood favourites, kids everywhere were living the dream and I couldn’t wait until my kids were in school and we could embrace this wonderful idea too.

Then this year we finally got a chance to. Megan briefly wanted to be Cinderella but then never really swayed from being a rabbit from Peter Rabbit, and Ethan was set on being The Gruffalo… No the big skeleton from Funny Bones…no Sam I am..No green ham…no Aliens love underpants…definitely a skeleton..Okay the robber from cops and robbers! It was far from the fun easy adventure I had anticipated as we enjoy so many great books and my son is evidently as indecisive as me. In the end he settled on a Cops and Robbers (Grabber Dan to be precise), and we had a few last minute costume makes, and then Megan was a gorgeous Lily Rabbit. I just loved that moment they saw themselves for the first time in character – so exciting!

And then me with my bright ideas suggested in our PTA meeting a few weeks back that we dress up too and share some stories with the classes in school which was embraced well, and subsequently evolved into me sharing one to the whole school in an assembly – Score..nooottt!

I rocked up to school dressed as Peg Polka dot from “The Troll” complete with frying pan and plastic fish and had great fun reading to reception whilst the other mum’s tackled the other classes. Then the school gathered in the hall where I shared (in my dressing gown) one of our faves “Zagazoo” in Assembly to hall of eager kids and teachers.

I do love to perform, it makes me happy. I am a little eccentric at times, and wish I dare be more so sometimes, But I do feel comfortable being a character and acting, and to do this for my kids school is a moment I will remember for a long time. Not just that but that moment in the morning when they looked in the mirror and saw themselves in character! It was so precious and it felt so good to be silly with them and embrace this opportunity of being a school mum on the PTA on world book day. Its was so much fun and so many giggles.

Our first world book day was easily a success and I found it a wonderful thing for me to share this with the kids too. I think it was good for them to see me in their school life and me them. To be in Megan’s class and see her grinning “that’s my mum” was certainly a lovely thing. To hear their class mates laughing their heads off and thinking I’m a rather cool mum (I hope ha) was just great for us all, and we left school on such a high… they had loved being dressed up and sharing their books with their friends. They had appreciated differences in likes and dislikes and had loved the chance to have a day celebrating the wonderful world of books and stories. A day to exercise imagination and passion, and an ordinary moment of childhood we embraced wholeheartedly – roll on next year!

 

The Ordinary Moments
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Well what a lovely week we have enjoyed with World Book Day yesterday, Pancake Day Tuesday, and Alice’s first proper hang out at the soft play (steady on)! Its certainly been another busy one but filled with lovely moments, accomplishments, and Kids bossing it this morning in assembly with awards and mega house points! Big time proud mama and exhausted with our antics.


At the start of this week, I was unbelievably excited to turn the calendar to March, the reason being for the sheer fact I felt it acceptable to rotate my wardrobe to a more spring feel and put away my dark Wintry look. But after the crazy showers of today, I am very much second guessing that choice.

I feel like I fell into a bit of a rut over Winter and it just generally feels like it has gone on for so long. I am craving colour and more patterns in my life, no more thermal socks and a new pair of shades! I hate how safe I play it in my style and Winter makes it easy to wear anything under a fat coat! I guess if anything its turned out to be a good lesson for this years Winter – maybe spice it up with a few more colourful knits or layers, but for now I welcome in my long forgotten Spring wardrobe and hope to build up a fresher look too over coming weeks.

This leads nicely into my main frugal thing of the week – Purging my clothes! I tend to hang onto things “just in case” but with our impending move it was refreshing to be strict and have a really good clear out.

Purging my wardrobe

Last week I went to a great bloggers meet up with local bloggers where we had the opportunity to listen to Sara from Me and Orla.  I had little expectations, just rocked up to be sociable and with an open mind to see what discoveries I would make to aid my blogging life, and in fact came away completely inspired. One of the main things I took was summing up my style in 3 words, and since I spent a good few days analysing this, I was excited to completely rid my wardrobe of anything that didn’t fit into at least one of those words.

Rotation from Winter to Spring seemed the perfect opportunity and so I spent most of Wednesday afternoon wading through my entire wardrobe deciding if it was a keeper or purge! In all honestly I have been left with a rather sparse everyday wardrobe for this season…a load of skirts I failed to see, and a lot more confidence in the direction I am headed.

I realised in all of this that money can be saved in only buying things I truly love and feel are me, instead of being tempted because its cheap or on sale. Why buy 3 tops for £4 in the charity shop that are okay for a few months, when I can invest in one nicer top new elsewhere that id wear way more? Or maybe it is charity still but I just need to be more selective, really love it and have it fit into my “me words”! And then I actually need to be bothered to style my look better… I hate feeling drab but being a stay at home mum with a snotty baby sometimes is the only excuse I need to not be bothered.

We often think frugal and thrifty are not spending money, but I think  its finally clicked that sometimes it’s more about how we spend the money. As a result I am starting a new goal to be way more selective!

Cute Baby Extras

In one breath I am saying goodbye to half of my wardrobe to the charity shop or a clothes swap (fingers crossed I get some me things!), and in the next I welcoming in more to boost the babies! Well it was just 2 items this week and I love them both. I find this age (6-9 months) gets so easily stained and worn that I am always looking for extra little tops and stuff, and these were just £1.25 in our local British Heart Foundation. The cardi is from gap, the top from Next.

Its so hard when their age crosses seasons, and the lovely dresses she has had seem to not be working anymore. As long as there are charity shops its not an issue over here! £2.50 for 2 tops – Barg!

Well I wish you all a lovely weekend (of frugal choices), we are looking forward to having a free day out to the forest 🙂 will let you know how it goes next week!

 

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I am the 1…the 1 in 4,000 affected by Edwards syndrome. The 1 told by doctors that I had “pulled the short straw” this time. The 1 that had to fight for care for my unborn child. The 1 in 10,000 to have rare and complex congenital heart defects as a result of said syndrome. And the 1 of the 10 to have a stillbirth that day.

Yes I am the one affected by Edwards syndrome, and now I am the 1 with a baby who died.

We throw around these statistics to pregnant women, and in conversation in medical settings, like it means nothing or that is something so rare. Perhaps its even down played that they have nothing too much to worry about (or heaven forbid it would be me). But when it comes to one of the babies with an extra 18th chromosome… it is me, and to me (the 1) it means everything. To us with the short straw it is our world and lives shifting from what we once knew and hoped for. It is a dream of a precious new baby, another sibling, and a lifetime together, turning into an awful nightmare, and a life with a broken heart.

Stats mean nothing when suddenly you become the stat!

March is Trisomy 18 awareness month (though as yet I’ve barely seen anything about it anywhere), and I want to share with you not just awareness of the syndrome and how it affects families, but I want you to become aware of how little is done to help the babies who are diagnosed with it. (And when I say little, it’s usually a big fat Zero!).

Edwards Syndrome

I’d never heard of Edwards syndrome/Trisomy 18 until my 3rd pregnancy when my 20 week scan revealed some major health problems with our little girl. What that meant was that I had had 2 other healthy babies and never heard it was potential risk to them either…not just potential but that it was the 2nd most popular syndrome in the UK with 1 in 4,000 babies affected by it.

At that time (within the last 6 yrs) there were no routine tests for it like there was with Downs, and no one ever really talks about any of the potential chromosome risks unless you physically (because of previous pregnancy or age) are a risk. I feel like it’s often brushed over, and even in my latest pregnancy (2016) when I was offered testing they just quickly mentioned the names of the syndromes with no explanation of what they were or how they would affect my unborn baby.

 But what I also didn’t know 3 years ago is that medically, babies diagnosed with Trisomy 18 are labelled as “not compatible with life ” and subsequently all care withdrawn – Another thing they would NEVER tell you when they offer screening in early pregnancy!

And its not just care that is withdrawn, I’m talking food too! At least that was my experience here in Yorkshire… And to make it worse, they really make you feel like it’s the kindest way, because anything else you would hope for, to give your unborn child a fighting chance, you’re just prolonging the inevitable…

 An Edwards Diagnosis

At 20 weeks my baby was diagnosed with a very rare form of CHD (congenital heart disease), it wasn’t anything we carried or had done, more just “one of those things”. Her life expectancy went to a maximum of 15 years and a life of intense open heart surgeries and drugs to patch her up. It was later revealed via an amniocentesis that the cause of this (and a diaphragmatic hernia), was a chromosome defect known as Trisomy 18 – or Edwards syndrome. She had it to its full whack meaning every cell, and every new cell would always have an extra 18th chromosome.

I remember the horror in my heart when they told me at about 32/34 weeks that she would no longer be a candidate for heart surgery at birth.

I remember feeling so alone and speechless to be told that when she was born, “we would just make her comfortable until she dies!”. The plan was named “comfort care”, but there was nothing comfortable about it, and looking back I didn’t at that point quite grasp that either;

Me: “I plan to breast feed her, so if she struggles sucking, we can tube feed her that right?”

Them: “No she won’t be feeding, she won’t have anything. You can hold her and we can give her drugs to make her comfortable until she passes away” …

 “UNTIL SHE PASSES AWAY????” How do they know she doesn’t have 2..3..4..weeks or months of life in her? Who are they to withhold care and nourishment from my baby because a book told them that this syndrome = not compatible with a life? Life limiting yes, but she is entitled to a chance at some life with her family surely?

And how did they know that they weren’t cutting it short because she’s not in their eyes compatible?

At this point I knew of babies UK and worldwide that were living for months, and some for years. I just wanted time, any amount of time to meet her. I wanted some time to be her mum and time to kiss and cuddle my baby. I wanted a family picture and to take her outside and feel the sunshine on her skin. I wanted time to have her blessed, to be in our home, and to meet her family that were very much looking forward to meeting her.

She was fighting inside and I just knew that with some help and faith in her, she would fight outside too.

 I remember thinking that the original heart disease diagnosis was great compared to this.. and then wishing she had Downs, or even some kind of cancer,  because as hard and as horrible as an illness as cancer is, it would actually have meant that they would do something for our child. They would care for her, they would give her a chance to life.

I wished in those final weeks of our pregnancy that I had never had that stupid amnio they pushed me towards, because you know what? Then they would have had to give her a chance to life because they wouldn’t have any formal confirmation of anything!

I gave them what they wanted in faith it would enable them to better care for her, and in return they took away what I wanted!

And that is the reality of Edwards syndrome that no one wants you to see…their label… their lack of care. The lack of compassion… the constant pressure to “terminate” this life.

No chances and little hope.

I fought for weeks for a care plan, and research led me to understand that babies left til their due date often will be stillborn as the placenta stops working … with this piece of information in a study via SOFT UK, I begged for induction and to have her born alive whilst she was still growing and kicking. But who was I? Certainly not a doctore and certainly not someone they were wanting to take seriously. They finally agreed to a care plan beyond comfort after 4 meetings, but didn’t (or wouldn’t) listen on the induction front, no matter how much I asked they wouldn’t!

And so it ended in how we suspected – at 39 weeks + whatever days (full term) I found out she had gone.

She was born asleep on her due date, and after another fight for them to “please test the placenta” it revealed that patches weren’t receiving oxygen and it had an infection… was that a coincidence? I don’t think so… Mum.knows.best! We obviously choose to listen to some research and not others.

So that is what 1 in 4,000 looks like. That is what being the 1 means – A death certificate instead of a birth certificate. A fight for care in pregnancy…A grave where your child lays, and a lifetime of memories gone. A brief cuddle when you long for many more. One little kiss, and a box of memories I look at, of baby things to remember that she was here…

I am the 1. She was the 1.

 
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