Trust Your Instincts…fact.

It's ok to question the 'Professionals'.  I don't mean you have to question everything, but if I have learnt anything in my journey of being a mother, it is definitely wise to go with your 'gut instinct'.

The first time I should have questioned 'them' was when I was actually in labour with Meg…..  I am a very calm 'labourer', I do not shout, or scream or make a fuss.  I am happy to be left to get on with the task in hand.  However, just before having her, I had the most dreadful pain in the back of my leg.  It was so bad, it over-rode my contractions.

My midwife said I was just tense, and needed to relax (bearing in mind I had actually slept through the majority of my labour and only woke for the last two hours, I thought this fact was slightly untrue…), however, I just couldn't think straight because the pain in my leg was so bad, and also, I was just about to give birth.  There was a point where it was almost unbearable and the Midwife picked my leg up and 'vigourously' rubbed it, nearly sending me into orbit! I would have sworn at her had Meg not have shot out, and with all the commotion of the new arrival, my leg took second, third, fourth, fifth and so on further down the line in importance….

Three days later I was back in A&E with two DVTs, one at the back of the knee, and another that had broken off from that and lodged itself near my groin.  Noted thanks given to the great Midwife who duly helped the clot travel towards my heart/brain.  It was hit and miss whether I was going to lose my leg or not.  Obviously from my ability to run to the nearest food outlet lets you know that I didn't, and all was well.

The second time I should have questioned 'them' was the day after Meg was born, and I had noticed how 'puffy' she was.  As this was my first baby, I had nothing to compare to and can definitely say I had no idea what was normal and what wasn't.  Obviously scared of every nurse and midwife there was (why, I have no idea, but when you are young and vulnerable, you are stupidly naive), I timidly asked one of the nurses to come and check her over.
"What's wrong?" she briskly asked.
"My baby seems very errrrm… swollen." I said
Efficiently whipping off her baby-gro with one arm, making me feel even more inadequate, she quickly looked over her tiny body.
"She's just got a fat fish!" She confirmed.
I could feel my face burning.  I didn't even know what was a normal 'fish' looked like on a baby!
Nine years later, when she was diagnosed with Turner Syndrome, it was so obvious that she was born full of oedema hence why she was so 'swollen'….

The third time I should have questioned 'them', was when we had a 'visit' from the dreaded Health Visitor.  Meg was 9 months old, and I was completely exhausted from her constant screaming, and lack of sleeping.  She came in and assessed her in about two and a half minutes.
"What this child needs is a good routine!" She exclaimed.
"She will not sleep for longer than three hours at a time." I replied
"Well, then you will just have to make her!"
She scribbled something down in her little blue book and left.

What the Health Visitor needed was a good kick up the arse, and a good whack round the head with her little blue book…...

I could fill this blog completely with questions that I should have asked the professionals, but I don't feel angry, or regretful, only a slight disappointment with myself.  Of course, now I realise that this is all part of growing, and becoming a better mother.  Knowledge comes with experience, which then turned into power.

And power is what all mothers are blessed with, if only we had the 'blue tac balls' to go with it!

She dies…..

My darling Granny Ford died on the Thursday morning at 1.30pm.  Did she know I wouldn't be able to come again until the Monday?  We did tell her, but whether she could hear us or have any control on when she would leave this life is only speculation.

Meg and I were due to attend the Turner Syndrome Annual Conference, at Chorley that day.  We drove down and got organised.  Well, as organised as you can get with a death and a daughter in a wheelchair.

My beautiful friend Arlene, made a toast with pink fizz to Granny Ford.  She would have loved that, and I will be forever grateful for the acknowledgement given to her that evening.

Thursday is a day to catch up with Committee Members, as when the Conference starts, it is all hands on deck, with very little time for any conversation what so ever.  Meg was 'beyond' shattered from the drive and so went off to bed quite early.I stayed up for an hour later, and then retired myself, not feeling quite as excitable as I should have been.

Friday was 'full on' with dance rehearsals and greeting people arriving.  Saturday was busy with final rehearsals and nipping to check on Meg who could not stand upright without face-planting walls.  She looked like death, but was full of determination to make it to the evening Showcase, which managed to pass without any hysterics…. Awards were given to two of our beautiful girls who had passed away this year, Holly (aged only 21) and Angela.  Such a heart wrenching speech was made about both girls it reminded me of their fragility and how easy it is to brush aside the seriousness of the condition.  The minutes standing ovation that was given in their honour was a fitting tribute to their lives.  With each passing second, the hairs on my arms stood more and more erect.  A crescendo of emotion rising into my throat, I managed to suppress a complete meltdown that could have easily manifested itself into hysteria.  Self control is a funny thing, and something that actually, I don't have too much of an issue with but, managing to distance myself from a years grief and worry was something else....  Swallowing a lump the size of the Universe, I focused on the wonderful show "The Addams Family A.K.A. The Turner Family" - it went so quickly, that I didn't have time to go back and dwell on sadder moments.

How very lucky am I to be fortunate enough to be included in such an amazing association.  Watching the girls dancing and singing lifted my heart out of the depths of despair into blue skies and rainbows.

I have wanted to share this script with you for some time, but it has only been appropriate to do so now.
It's a scene from Mr Magoriums Wonder Emporium.

Mr. Magorium: [to Molly, about dying] When King Lear dies in Act V, do you know what Shakespeare has written? He's written "He dies." That's all, nothing more. No fanfare, no metaphor, no brilliant final words. The culmination of the most influential work of dramatic literature is "He dies." It takes Shakespeare, a genius, to come up with "He dies." And yet every time I read those two words, I find myself overwhelmed with dysphoria. And I know it's only natural to be sad, but not because of the words "He dies." but because of the life we saw prior to the words.

[pause, walks over to Molly]

Mr. Magorium: I've lived all five of my acts, Mahoney, and I am not asking you to be happy that I must go. I'm only asking that you turn the page, continue reading... and let the next story begin. And if anyone asks what became of me, you relate my life in all its wonder, and end it with a simple and modest "He died."

Molly Mahoney: [starting to sob] I love you.

Mr. Magorium: I love you, too.

[picks Molly up, sighs heavily]

Mr. Magorium: Your life is an occasion. Rise to it.

And so we must. x Amen x 

Men are from Mars, Women are from Venus

Meg had about a months reprieve from her headaches when she first had her shunt… then they slowly crept back, like poison ivy, spreading itself throughout her body, only there was no handsome prince to come and chop it down, and our time since has been primarily been spent on Ward 10, at Birmingham Childrens Hospital.

Men seem to take on a completely different approach to life than woman (thank god…), and for a while I almost resented Craigs ability to not be consumed in grief and worry for our daughter.  It took me some time to realise that Men really are from Mars and Women from Venus. 

Idiopathic intracranial hypertension, scoliosis, loss of hearing, severely under active thyroid (which warranted a call from the Registrar to see how she wasn't in a coma), lymphedema,  bicuspid aortic valve, postural orthostatic tachycardia are just some of the issues Meg is blessed with because of her Turner Syndrome, but for me, my main heartache was spent on her infertility.

There I was completely engrossed in the possibility of being able to harvest my own eggs and freeze them for Meg, IF and when she needed them, it wasn't that Craig wasn't interested in the process, he just didn't need to understand it.  And whilst I was swotting up on ethical issues surrounding our dilemma, his main concern was which washing machine and tumble driers we should get for the apartments….

It took me a good year to be able to ring Birmingham Womens Hospital and speak to PALS about our 'experience' within the infertility sector. The magnitude of the whole 'cock up' (excuse my language), made it impossible for me to address it in person to anybody.

Now I know that many of you will have your own views regarding this very sensitive subject. What I would like you to take into account, is it was my choice, and I chose to take that route.  I didn't force it on anybody, nor have I ever given my opinionated views on your 'dilemmas'.  If you are offended by what I tried to do, please press X.  We all try to do the very best for our children, and what I was trying to do was keep another door open on a rapidly closing long corridor.

Are you ready?  Then I'll begin.

Our Endocrinologist from Birmingham Childrens wrote a letter to the Consultant Gynaecologist at Birmingham Womens,  asking "if there was anyone within Birmingham who might be able to discuss this further with mum?'  A long letter was finally written (after many months of chasing) and an appointment came through.

I already had tears in my eyes before we left the car park and walked into the hospital.  We were shown to a seating area and I was called in to a side room by a nurse.

"Can I take your weight please?"

I stood on the scales.

"Did you bring a sample with you?"

"What type of sample?"

"A Sperm sample!"

"No!  I wasn't told to?"

At this point my eyebrows which had nearly met in the middle with confusion obviously scared her into saying, "Not to worry, the Dr will discuss everything with you when you go in."

And we were left for a further hour, me stewing on what was requested, and Craig bored senseless.

We were finally called through to a room - picture the scene.  The nurse opens the door to a foreign Doctor sitting behind a desk reading what was obviously the referral letter about Meg and her infertility, without acknowledgement he waived his hand towards the chairs sitting opposite him.  Both Craig and I sat down and waited patiently for a good five minutes whilst he read the letter (bearing in mind, I had already read it 4 times by then - upside-down!).  Now, I have the patience of Jobe, but seriously, I thought I was going to lose it on his ignorance…… and he launched straight into his questions which were directed at me:

"How many sexual partners have you had?"

I answered, slightly shocked, but as I was only the mum and not a consultant what did I know?

"Any sexually transmitted diseases?"

shocked again, I answered.

"Right, so you have had no live births?

"I beg your pardon?" I retorted.

He looked up and sighed (like he was missing his lunch break for this….) "I said, YOU HAVE HAD NO LIVE BIRTHS RIGHT?'

I looked at the nurse, I looked at Craig and stood up.

"Can I ask what it is you THINK we are here for?"

His eyes searching the referal letter looking for a clue….

Fury took over..."I asked you a question.  WHY do you think we are here?"

Indignantly he looked up and said, "For assisted conception, you want children and can't have them naturally!"

"Show me where on that piece of paper that you obviously haven't read, nor can understand, that I am looking for assisted conception"

"Oh, I am sorry, this is quiet confusing."

"Is it?"

"How can it be that I have read that letter four times now - upside down, word for word, and can understand completely what has been asked.  I am furious.  For a start even if was about me, the D.O.B and name on the top would make me 11 years of age!"

I turned to the nurse, and said, "I am absolutely disgusted and appalled at this.  That letter clearly explains that my 11 year old daughter has Turner Syndrome and I am enquiring about having my eggs harvested for her use in the future."

She was so brilliant, and took me into another room, where I promptly burst into tears through pure anger and frustration.  The Consultant came through with some tissues and apologies.  He promised he would have a meeting with the rest of the consultants on Thursday and could I ring back to see what had been discussed.  I rang on Thursday and he said he didn't have time, but could I ring next Thursday morning to remind him to discuss it at the meeting, and then call back after the meeting (did you get that?!)  and so I did.

"Oh yes, Mrs Cubitt, I'm afraid you are too old now, and with your history of familial disease I'm afraid we cannot offer anything and that is the end of the matter.

And so I put the phone down and cried (again) - I did a lot of crying then.

The helplessness that I felt then was about as high as it could possibly get.  Nobody knew how I felt, wretched and grief-stricken.  All I wanted to do was to give her a choice.  It would be her decision to be made and not anybody else's to take away.

Sometimes life sucks.