**Guest Post by Sally** #mpsawareness

  In 2015 our family had no idea that May 15th was MPS Awareness Day. We were lucky. Most people have never heard of MPS (mucopolysaccharidosis). Why would they? It is not the rarest of diseases, but rare enough to be described […]

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The ‘Others’…

I have met some ignorant people while out and about with Ethan (for those of you who’ve not read my stuff before- Ethan my teenage son who has a rare condition known as Hunter Syndrome. You can read more about him here […]

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The Things I’ll never tell you

As a special needs parent, there are many things I will never say. I believe most parents like me speak in “code.” I’m pretty sure I’m not alone with this. I will never tell you that today I cried. I will tell […]

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Liebster Awards-11 Quick Questions!

The Liebster Award was created to recognize, promote and welcome new bloggers to the blogging community. Cheers Eddie from AKA Daddy for nominating little old me to answer 11 questions! THE RULES:  Thank the blogger who nominated you, including a link to thier […]

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OMG- The Sh!t I say!

I am a mother to three wonderful unique boys. I first became a mother on the 18th of May 2002…that’s almost 14 years ago. In those 14 years I have said some strange stuff with a very serious face; here are just […]

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Conversations …

When your eldest son is diagnosed with a rare genetic life-limiting condition, there are conversations you thought you’d never have. Ever. The obvious conversations are dark and morbid; normally these happen in the early hours of the morning after a rough few […]

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Dream a little dream …

From the moment we know we are pregnant…we dream. We dream about this little person growing in our bellies. We dream about what they will look like, who’s nose will they have? Who’s hair…who’s mouth…eyes…? We dream as our bellies grow and […]

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It’s only words and ….

I used to believe the only important form of communication was indeed words, how many of us have ever actually thought about communication without words? Most people in their lives will never have to worry about finding ‘other’ ways to communicate. I […]

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Who the F**k is Lucy?!

Toddlers can scare the absolute sh!t out of us adults not just with their lack of regard for their safety but there’s another way these little dictators can keep us up all night long. “Mam…mam..mmaaaammie” he shirked. I rolled my eyes…this was […]

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