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Journey with us as we battle living with ARX, a rare genetic Disorder.

July 5, 2017

As children we were very fortunate to experience so many lovely holidays. I recall holidays on farms, holidays in the country, some by the sea, in hotels or cottages but always with a view. We were exceptionally lucky to be able to experience this and have these memories.

Travelling back from our honeymoon where I've done nothing but think about how lovely and quiet it is I have also had lots of...

April 30, 2017

Everytime I'm ill or in pain I think what if I couldn't communicate what was wrong with me. What if I couldn't touch the place it hurt to tell someone. What if I had to suffer in silence with my only way of telling someone that somethings wrong is by crying. This is what my baby boy goes through everyday. He can't tell me what hurts and how severe the pain is. All he can do is cry to tell me he's...

December 31, 2016

As this year draws to a close I write my last blog of the year. I haven't managed to fill you all in as much as I've wanted to this year so thought this was a good chance to catch up on not only Ethan's year but us as a family too. 

2016 has bought us many challenges but as I begin to write this those seem to be out weighed by the good times.

The new year started a bit rough for me when I had a bit...

April 3, 2016

Some people just absolutely do not get how hard and busy our life is caring for a child with complex needs. I am completely and utterly mentally and physically drained all of the time. Looking after Ethan is a full time job 24/7. 

I do the majority of his care on my own. Ethan goes to his dad's every other weekend. This means I have two full on weeks with Ethan full of sleepless nights, attend...

January 6, 2016

August can't come quick enough, the 11th to be precise. This is the day I've been waiting for, the day my car gets paid off. When Ethan was born I had a Vauxhall Astra sports hatch. It was lovely I loved it but when Ethan needed a specialised wheelchair it wouldn't fit in my boot so I bought a bigger car on finance, a Vauxhall zafira. It's lasted us for the last couple of years and last year we go...

December 30, 2015

As this year comes to a close its always nice to look back on the year you've had. As always one of highs and lows, excitement and sadness. 

I went back to work in January so have been back for a year now. I have really enjoyed being back. I think I've finally got the right balance between working and resting. Ethan has a lot of appointments so I can still only work part time so I can go to all of...

July 8, 2015

Have you ever wondered why the person walking down the street doesn't smile, or the person sat next to you looks like they've got two black eyes, or the person your working with is distant in their own world?? 

Have you ever thought about what's really going on in their life? What happens behind closed doors?? Why people look the way they do?? Do we take the time to find out people's stories or giv...

June 18, 2015

As nearly 5 years passes since I gave birth to my gorgeous boy I can't help but keep relive our past this week. Sometimes everyday life just gets you down. It all becomes to much emotionally, physically and mentally. My body is tired, my brain is tired and I'm running out of tears. The last couple of months have been hard and full on and as a single parent it's hard to get away from it, to escape...

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November 24, 2013

So the title of my blog pretty much sums up my weekend! This week I hurt my back lifting some of Ethan's equipment into my car. We...

January 20, 2013

So this is my first blog. I've been reading a blog written by someone I know and I've been really enjoying it. I've been consideri...

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