They are only shoes
There are a number of reasons we don’t do certain everyday things with Ethan. Never assume it’s because we haven’t[…]
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Category: Ethan
Raising a child with a life limiting condition; the reality of MPS- hunter syndrome.
Amazing May15th !!!
May the 15th is international MPS/ML awareness day. As you all know by now Ethan has Hunter Syndrome, what you[…]
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I’m still mum?
The plans I had. They were epic. I could see myself, the ever laughing mum, the one that whizzes around,[…]
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Perspective
Ethan was having his usual treatment on Thursday. He had also his usual treats, practically anything he wanted, when he[…]
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That box in my head…
Sunny days , hazy rays….don’t you just love it? Today was one of those ‘Spring is in the air days’.[…]
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Awareness – help spread it!!!!
(Genetic &) Rare Diseases Day- February 28th. That meant absolutely nothing to me, hell, if I’m totally honest, I never[…]
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Appointments and Ethan
We finally got to the appointment. The appointment, they’ve been hounding me about for a good two months. We walked[…]
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Stop the world…sometimes I need a break
Today I read two posts on Facebook. One about facebook connecting parents, like me. The other about the loss of[…]
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The dangers of ‘envisioning’
It has been nearly four weeks since Christmas. In that time, there have been deaths in the MPS community, all[…]
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Sometimes…just sometimes…
“No point stressing on the things you can’t change.Move on and grow stronger.” I read these kind of quotes every[…]
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