Tenko

And you think I'm joking…..

Between Meg being diagnosed and starting her growth hormone injections (it took a LOT of tedious organising) we went to our first Turner Syndrome Support Society (TSSS) Conference.

This was only 6 weeks from finding out and to be fair, looking back I was still in shock.  It was a bit like thinking you were on the gentle merry-go-round (the one with the horses that gently go up and down) of life, only to realise that within the blink of an eye you had somehow managed to find yourself sitting on a front row seat of The OBLIVION ride at Alton Towers. With no way of getting off until it finished - however long that was going to take!

Our lives had become entwined with urgent hospital appointments and new 'Consultants'- , some better than others in their people skills, and because I was so new to the whole system (and fairly fragile) - everything was taken on board without question (yes… I can see your smug faces and the slow shaking of your head in disbelief, BUT I WAS THE NEW GIRL THEN!).

What I found most unnerving was the lack of in-depth knowledge about Turner Syndrome within the medical sector.  At the beginning I mumbled and fumbled my way through, hoping that not too many Doctors and nurses would ask me yet again what it was, when really I had no idea myself.  I felt completely out of my depth, and a fraudster posing as a mother.  Their puzzled faces and then raised eyebrows at my incompetence became an all too familiar sight.  Ofcourse, the tables have turned now, and I am eager in telling health professionals to "Go and do your research before you lay a finger on my daughter."  But back at the beginning, I had definitely failed.

There wasn't another mother I could speak to in the area and isolation crept in like a poison ivy.  Nobody knew how I felt, and anger and resentment set in to people that were managing to carry on their normal lives, when ours had clearly shattered into a million pieces.  I hated everybody.  I didn't ask for this and I bloody well didn't want it.

I didn't know where to turn and so I rang the TSSS and spoke to the Oracle (Arlene).

"Hi Arlene, it's Sam Cubitt, Meg Cubitts mum.  You managed to diagnose my daughter over the telephone…"
"Oh yes, how are you?"
"Heartbroken"  I can feel my throat tighten at admitting it and my voice was getting quieter and quieter.
"I know……"
And do you know what? She DID know! That amazing strength and comfort that can be drawn from somebody that knows exactly how you feel can never be repaid.  It is a Golden Masters Degree of the highest order.
"You know, we are holding a conference in six weeks, I know it's early, but you could probably learn a lot and meet some other families to talk to."
And so we booked and drove up to Blackpool on the Saturday morning.
What I didn't realise was that it was at Pontins, and as we pulled up outside the front of the 'establishment' I saw barbed wire running round the top of the building.

"Oh Crap…." I said, "We're in Tenko!"