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Now, I know and you know that the child couldn’t control himself and didn’t mean it but the general public tend to think that if a woman has a black eye there is only one reason for it. So sit back and relax and read my little tale about that one time my husband had a wife with a black eye and a son who’s both hands looked to be broken to the untrained eye. I had Ethan in my arms while he tried to swing his head back, almost connecting with my face each time I tried to get closer to my disregarded sunglasses. My husband ran passed me and grabbed Ethan up in one swift move and carried him under his arm like a rugby ball.

I mean absolutely everything,but regardless of our picture boards or our explaining about what was going to happen next, our little dude could not help but throw a 3T our way. It took us years and years of understanding and educating ourselves and those around Ethan to accept that these 3T’s were not his fault nor were their our fault. There is something however, slightly more intense about the child throwing a 3T for no apparent reason, the child who cannot regulate themselves as well as other children, that is the child that draws an audience of ‘Marys’ or ‘Know -it Our child who is currently dealing with one hell of a sensory overload that they feel like their world is spinning rapidly out of control is having such an intense meltdown that all they need right there and then is a safe place not a parent or carer who feels like they are being harshly judged.

Wake them up early Saturday morning and Sunday morning so they can get a good start on their “I-swear-I-don’t-have any-homework” homework – the teenager can get really annoyed by this and use some naughty words. At this point you remind them of all the early mornings they gave you and how looking back now, you appreciate them as it made you get a lot more done in your day. That’s your cue to turn the music up and add a bit of mom moves to your singing. Keep that gem for when you really, really want them to do something that they really, really don’t want to do, like tidying their bedrooms.

It took almost 6 years to get a diagnosis for Ethan, considering his syndrome, I am pretty sure there are parents out there who know something is going on with their child and they are on the cusp of being told it’s a rare genetic metabolic terminal syndrome called Hunter Syndrome. Having a rare syndrome like Hunter Syndrome means that there isn’t enough research or people alive with the syndrome to force government into funding a research lab in order to make a drug which might cure the syndrome. Parents in America, England & Europe are the ones trying to raise funds in order for a lab to be able to do some research into some form of a cure for Hunter Syndrome because it is rare and rare doesn’t register with governments. The bottom line is – having a rare disease is not that rare and parents and those with rare disease like to talk about their journey, they encourage thoughtful questions, conversations around awareness and what life is really like being rare.