May

May for us has always been a month to promote awareness around Mucopolysaccharidosis (also known as MPS. I imagine because it’s pretty tricky to pronounce Mucopolysaccharidosis!)MPS Awareness Day is May the 15th. For years, I have tried to make it a ‘known’ […]

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Who Am I?

The morning sun paints the dining room, illuminating the bright yellow walls. I sit at the table with my freshly made cup of tea.My daily routine is so vastly different these days. Sometimes I am unsure what it is I should do […]

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Seasons

Summer dances over the horizon, Seven months have crawled by, Yet, seven months have sped away, I’m stuck in a sandpit of sorrow, Despite the seasons rolling by, Your smile, your laugh, your voice echoes,   All the while the sun still rises […]

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Grief- what we don’t say.

Why don’t we talk openly about the gut wrecthing loss of a child? The fact is we don’t want to burden, upset or shock, yes shock, those who care enough to ask, “How are you doing?”. I think we should talk about […]

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