Anything else?

Six weeks after the Conference whilst all this trauma was invading our lives, it also didn't help that we had started converting the back of our Funiture shop into 11 Apartments.  It was a pretty huge project, with the main contractor being the Project Manager, and Craig being on hand as and when his opinions were required.

We also moved house that summer, into Hampden Way. Our old house was relatively new (15 years old), and so had great storage, lots of rooms and toilets and utility room, but the garden was the size of a Haribo chew and the style was just not me.  So we come across and fell in love with a quirky tiny house with the intention of extending out to fit us all in, because you definitely had to be of the  Hobbit variety to live there.

Our roles, just fell into place, I would devote my energies into the children, and Megs health care, and Craig would keep the shop going and the 'conversion' in check.  My days were spent going to various checkups in Birmingham Childrens Hospital, and then ferrying back and forwards to school, clubs etc.

Making a conscious effort that the balance of attention between the girls was equal.  

Our next 'heart attack' came when I was taking 25 Brownies to The National Space Centre for a trip out.  Meg had always needed extra support and so I always helped at whatever club she joined…. Our two nieces were stopping with us for the weekend - they both boarded in a London School as their Parents lived in Germany as his brother is in the Forces.  So anyway, there we are on the way back from a particularly rowdy day out, I was knackered, and as we are waiting for the children to get off the bus, I noticed I had 5 missed calls from Craig.  Which I thought was a bit weird, but didn't think anything of it, other than he might be querying when we were going to be at home. I returned the call and he asked why I hadn't returned his calls.  Thinking he was being a bit sh*tty, I said, "errr, hello! 25 Brownies in one room - doh!, anyway, what's wrong?" He just said, "Wayne Kerr (I have changed his real name to one I think is most appropriate because I know if I had any backlash from him talking about this, I would definitely end up in prison for murder…) has gone into voluntary liquidation, taking all our money with him."

 I said, "I'll be home in ten minutes.".  It was obvious from the state of Craig when I arrived that the shit had well and truly hit the fan.  We had paid the Contractor early every month, and actually had accrued enough early payment interest to get the house sorted as well.  They should have been three quarters of the way through the conversion, when in fact we realised pretty early on that it was only half way there, and even worse was the fact he hadn't paid ANY of his sub-contractors even though we had paid him.  It wasn't just a couple of hundred pounds, or a couple of thousand pounds, but HUNDREDS of THOUSANDS of POUNDS.

Craig was indeed a broken man, but bizarrely I just said, "Well, we have no choice but to continue, we shall have to both project manage it with the help of some of the carpenters we will keep on.  It will be fine.  We will sort it.  And I went into organisational overdrive.

I was not going to lose the house, my husband from stress, my children from social services because  there was no way I could be a proper mother taking on all these roles, and no way - under any circumstances was I going to be ruined by a some complete male idiot.  The female empowerment began to take hold.

I became superwoman - except my big pants were always worn underneath (to contain my blue-tac balls) and to keep my vest tucked in…..

You are not alone…..(For Christine, with love)

As we pulled into the car park, I remember seeing lots of other people.  Our chalet was ok.  It came complete with an ashtray by the side of the toilet…… and it was while I stood looking at it like it was some sort of relic that I heard a noise.  It got louder and louder and LOUDER, I realised it was a plane (those of you that know me will appreciate my hysteria regarding planes landing on my head…) so I dropped to the floor like a lunatic.

"We're on the end of a runway Dom, it's fine." (Craig calls me Dom)
FINE? No it wasn't fine!  We were stuck in Tenko, there was an ashtray in the toilet and now we were about to get flattened every 30 minutes by the latest EasyJet plane.

Making our way over to where the Conference was being held, I can remember the feeling of dread rising up from my stomach so violently I thought I would vomit.  The girls however thought it was so exciting.  On entering the building, we were greeted by a smiling lady on reception who gave us name badges, and told us that the Welcome Meeting was already taking place and we were shown into a large room.

The door opened and I remember seeing a wall of beautiful teenage girls.  Each one an individual but with similar facial features as Meg.  My eyes grew wide with acknowledgement that she had in fact definitely got this syndrome, it was a moment of pure clarity.

I looked around the room in amazement.  Realisation pouring through both Craig and I, that this was it.  Grief consumed me to the point of numbness, it took all my strength to hold it together. I remember very little details of the meeting,  other than an award that was being given out to one of the teenagers for bravery regarding her heart surgery complications.

Later, we were separated into 'Mums and Ladies with Turners'  and a separate session for the Dads (held in the bar…..) for a 'Heart to Heart' session.  I walked blindly on my own over to the room.  People were getting tea and coffee before they went in. Big, fat, hot tears were beginning to build up, and the more I wiped them away the more they came splashing on my cheeks.   Turning away from everybody, I faced a large plant in the corner of the reception area, I couldn't hold it in anymore.  Huge sobs engulfed my chest I - was frozen to the floor, and then another first time mummy joined me and her name was Christine.  We cried together thinking that nobody would see us, when of course they could, and we were gently coaxed into the room.

Sitting in a large circle it was obvious we were the newbies.  Mascara pouring down our faces and snivelling like we had just come out of a CS gas attack, we introduced ourselves.  How could I tell them my fears and worries without frustration and raw indignant fury about the whole unjust of it all?  We needn't have worried when about five of the older ladies with Turners, who obviously hadn't been given any growth hormone, hopped off their chairs came over to us and hugged us with all the love in the world and said, "We wish we'd of had the treatment and support your girls will get.  And we wish we'd had mummies like you."

Christine and I were glued together from then, her gorgeous daughter was a delight.  We learnt a lot that weekend, (mainly that we didn't like the food at Pontins and that the sausages looked like a body part and the bendy toast left a lot to be desired) other families embraced us and welcomed us into the Turner fold with open arms and nonjudgemental outlooks.  These people knew exactly how we felt.  The grieving process had started.

Coming away from our first Conference I was still heavy in my heart, but I had a different perspective. It was going to be okay.



 

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!"

PCT....

And then we started our University Degree in The Art of Understanding The National Health Service System....

1. PCT stands for Political Clap Trap.

We had to have a license for her Growth Hormone, and she was also placed on an anabolic steroid to give her a boost as she was so tiny.

I was not interested in who was paying for Megs treatment, only that she got it.  My anger on having to manage their administration incompetence nearly drove me insane.  I could not, nor did I want to, be bothered with 'Which Care Trust' had to deal with what, or how lucky we were to be offered "SUCH EXPENSIVE" drugs.

I cannot tell you how many Pharmacy Staff I wanted to throttle when we were trying to organise delivery of her Growth Hormone Injections.... *Raised Eyebrows* and sharp intakes of breath regarding the cost of such medicine, from idiots that knew nothing about our lives.  I always made sure I had blue-tac in my pockets and that both hands were firmly in place.  That way I could squeeeeeze the living daylights out of it without serving time in prison.

"I'm afraid we can't get hold of your Growth Hormone this week."

"Can you get it from another company?"

"Yes, but it's EVEN MORE *wide eyes* expensive!"

At this point I can no longer control my hands, and with a steely determination in my eyes, I placed my hands on the counter bringing myself slowly closer to the lady.

"I'm sorry?" I whisper "Did you say my daughter isn't having her treatment, because it's 'too expensive'?"

"And you are whom, in her care plan?" I whisper again, leaning closer....."For the fourth and final time, before I report you, I would like you to get on the phone to Italy and get the Growth Hormone delivered to our house by lunchtime tomorrow.  She has already missed 6 years of treatment for her condition, if she misses another 6 hours I will not be held responsible for my actions. Am I clear?" and with that, I looked down at my hands only to realise that I have two huge gouged balls of blue tac stuck on the ends of my fingers and now to the counter.  Without a second glance, I un-stuck my fingers like a scene from Tom and Jerry, placed the blue-tac back into my pockets and walk out the pharmacy.

Needless to say, the Growth Hormone was delivered to the house from then on, with only the odd delivery issue, and I never EVER had a problem with the lady behind the counter again.

There is a difference between being aggressive and being assertive, it took me a long time to realise that I was being assertive, but I felt like I was being aggressive.  Never before had I needed to fight for something so important and for somebody so dependent on me.  Personally, seething quiet tones work better for me than hysterical shouting.  

I once read a quote that said, "Inaction breeds doubt and fear.  Action breeds confidence and courage.  If you want to conquer fear, do not sit and think about it. Go out and get busy." And I was definitely frightened, but I wasn't going to be a pushover anymore. It was time to man-up and grow some blue tac balls!

Words....

Just for those that aren't aware, this is a picture of my beautiful girls.

When I say 'beautiful' I wonder what people depict......
Is it facial features?  Hair? Eyes? A particular shaped nose, or mouth? Someone tall and statuesque? Good fashion sense?
What a load of shallow claptrap.

Having a child with a chronic illness or disability means you have to learn a different language, and adapt to a different kind of life.  One that actually means something.  I am always amazed at peoples inability to see beyond 'what is really important'.

Would I be different if Meg didn't have Turners? Oh definitely.  And how can I be so sure?

Let me tell you.....

I remember my life before diagnosis.  Ofcourse, it had the usual stresses and strains, and ups and downs of family life. But we were free then, as in -  "Not in the control or power of another".  As soon as we had had that phone call from Dr Kirk, life as we knew it changed. Not in an awful way (although we have had our moments...) - just different.

I almost became super sensitive to certain words.  Words before that had no real meaning to me.
Peoples obsession with the height of their children made me want to spin my head round and turn into whatever her name was from The Exorcist, and the never ending subconscious 'future' decisions made for their little darlings nearly sent me into orbit.  And yet, I know for a fact, I was once one of 'those' mothers.

Now, I'm not saying for one moment that I am now the converted Mother Theresa (absolutely no hope of that happening, not even if I wore the veil and rosary beads...), but it has made me see life in a more philosophical way.

But my postings aren't always going to be about the trauma and grief that initially enveloped us at the beginning, but of humour (and good lord, you need that!) and baking with the odd bit of crochet thrown in for good measure.

I think you can find humour in most situations (except for the death of a child).  And can remember my anxious state driving to Birmingham Childrens Hospital to see Dr Kirk the following Tuesday when we got back from The Lake District.  We had decided to tell Meg at the appointment all together, which for those of you who know Meg, wasn't fazed at all by the new diagnosis.  Craig and I drove home with the weight of the world on our shoulders, whilst Meg and Daisy sang songs from Avril Levine and Girls Aloud in the back eating crisps and rubbish.  When we got back home I realised I hadn't got a thing to eat in the cupboards, and said, "Come on girls! We've got to go to Sainsburys."(other supermarkets are available) - and quick as a flash Meg replied, "Ohh Mum, I can't!  I've got Turners!"

"I'll give you Turners.... Get in the bloody car." And so the tone was set.

Diagnosis.

It was at this point, that I remember saying to Craig, "Oh God, please let it not be that." He just looked very uneasy. ALL I could see was the 'infertility' issue.  I put it in a box and squashed it into submission, not daring to believe she would have Turners, whilst deep down, I knew.

So, my first conversation with a woman who was to become one of my very best friends, and whom I hold in the highest esteem came about.... On the Friday I rang The Turner Syndrome Support Society...

"Hello, Turner Syndrome Support Society..."
"Errrm, Hello. (pause). I think my daughter might have Turner Syndrome."
"Ok.  Have you spoken to an Endocrinologist?" (THAT word again!!!)
"No, We can't get an appointment for another four months."
"Where do you live?"
"Rugby, Warwickshire"
"You live in the catchment for one of the best Endocrinologists in the country, Jeremy Kirk"
"Does he do private consultations?"
"Let me check............ yes he does."

At this point, I thought I might as well push my luck completely, I had nothing to lose.

"Right, can I send you a photo of my daughter and ask your opinion?"
"Errrm, yes you can, but I can't diagnose your daughter from a photo!"
"I accept that, but you are probably the most qualified person who will be able to tell." (I wasn't taking no for an answer)

*sends photo over*

"Actually, she does look like she might have Turners."
"Thank you, so much. I will ring the secretary of Mr Kirk and let you know."

I will be forever grateful for Arlenes support.  She will never know just how much comfort she gave me that day.  After searching for years for an answer to my justified queries, here was a lady who gave her knowledge and compassion completely and without question.

On that Friday, I rang Mr Kirk at Birmingham Childrens Hospital and asked for a private appointment. We were given on for the following Monday.   Bloods were taken and he said that it was probable that she had Turners or possibly Noonans Syndrome.  Ten days later I had a phone call.

"Mrs Cubitt?"
"Yes."
"It's Jeremy Kirk."
"Oh hello."
"Right, there's no easy way of saying this, but Megs Karyotype has come back, and I'm sorry to say, she does have Turners."
"Oh"
"Look, she has Mosaic Turners, so it may mean that she won't have as many issues as a 'Classic Turners' girl would have"
"Oh"
And then I start to cry.
"Come and see me next week, and we can have a proper chat about everything, I am so sorry to be the bearer of such news."
"It's ok (sob sob), I am in a way, relieved.  I thought I might be going round the bend... (huge gulps and sobbing)."
"No you're not, and I will help you in everyday possible."
"Thank you."
"Please don't be upset, I will see you next week."
"Ok, Thank you."
"See you soon."

And so we went away on the Friday to the Lake District, because we thought it would be a good idea to get our heads together before we told anybody.

Lake District.
Peeing down with rain.
We were all in one room.
Couldn't talk about it, because Meg was in the same room.
I wanted to kill everybody.

And then we came back, and I cried.