Giving Back…..

I was asked to speak at a Memorial Conference from a parents prospective of a girl with Turner Syndrome, to Consultants, Doctors, Specialists, Nurses and other Healthcare Providers today in London.  My fear was not of public speaking, but making sure that I managed to put across a tiny snippet of what it was like.  

Eight years down the line, I am more confident and things are less emotionally raw.  A calm has descended upon us, and when delivering my speech, I was aware that a newly diagnosed Mother (of 2 years) was sitting in the front row, unable to suppress her grief and sorrow - it poured from her in uncontrollable sobs.  Later, her husband thanked me in speaking in such a way that her emotions had finally been released, and our understanding of her situation as a parent was realised.  

This is what I call 'giving back'.  

My speech was as follows:

"I am very privileged and honored to have been asked to speak at The Angela Merry Conference today. Of course, every girl is different, and my story is just a blade of grass in a small meadow.  Others must be taken into account.

This first bit I would like to primarily address to the all healthcare staff.

That girl, sitting in front of you, isn’t just another hospital number, her name is Meg….she is my Cherished daughter – , the Apple of Craig’s eye, Daisy’s Special sister, Leona’s Nurtured neice, Ivy’s Courageous cousin, Mamars Marvelous granddaughter and a Caring, loyal friend to many others.

She isn’t just another ‘text book’ case, with a tick list of conditions to complete.  She is a unique person composed of many interconnected healthcare needs, so complicated and intricate that they are hard to deal with, not all of which you will understand.  You wont be able to ‘fix’ everything, but you have the knowledge and resources to assist in her care enough to improve and make a real difference in the quality of her life.

My journey as a parent of a daughter with Turner Syndrome, didn’t start when she was diagnosed at the age of 9, but when she was born.  I had already adapted my life without even realizing it, to caring with a child with special needs.

Meg was born at 3.18 am on the 9^th April 1996.  She was a beautiful blonde baby, with the most translucent blue eyes you ever saw, her Angelic gold ringlets meant we were regularly stopped in street to be told how beautiful she was – this was indeed all very good and well, until the pram stopped moving for a nano-second which gave her enough time to morph into the screaming Angel Of Death – with the ability to make ears bleed within a 50 mile radius……

We could clear shops and public places in approximately 3 minutes.

Perseverance became our mantra.

As she got older, other things became more noticeable. Recurrent ear infections, infected fingers and toes, continual colds, throat infections, any infections in fact, and so many bumps and falls that I am sure somewhere along the way, we were top of the list to be checked out by social services.   She could trip over fresh air, she walked into corners, cupboards, fell off curbs, misjudged walls, which meant she was quite ‘head’ friendly with them.

She was invincible, fearless, and frighteningly so.

We spent a lot of time in the Dr’s waiting room, and A & E, so much so, I am sure for a while they thought I was there just for the magazines…..

She was regularly temporarily fixed - the real reason was just being masked.

But we still persevered.

She slept for less then 20 minutes a day, so we took it in shifts, we stopped taking her out into unfamiliar places which seemed to send her into orbit, her hyperactivity was at it’s optimum level!

Helpful health visitors gave advice from a text book for a text book baby.

No wonder nothing worked…..

Then at the age of 6 something miraculous happened…. – she slept for a whole 6 hours!

She started school - one of her teachers in infant school had her sussed, and used to give her chores to keep her occupied if they had to sit still, that schools pencils were possibly the best kept in the whole of the UK for those three years….. and when she left, her teacher said, “Your daughter is fascinating and very gifted, but she is definitely running at a speed too fast for this world.”

It was after we had our 2^nd Daughter Daisy, that the differences between the two were very clear to see.  Firstly, Daisy at the age of three was only a forehead smaller than Meg, who was then 9, and secondly, teaching Meg social skills was hard work, where they came naturally to Daisy, and were easily retained.

It was when I was at the Doctors again (picking up more anti-biotics for yet another ear infection) that I mentioned my concern regarding her height, and other ‘oddities’ some of which I couldn’t put my finger on.

He looked at me like I was a lunatic mother, and told Meg (who at this point was hanging upside down on the examination couch, with latex gloves on her hands and feet, and one on her head for effect…..) “ TO PASSIFY YOUR MOTHER MEG I AM GOING TO SEND YOU TO SEE AN ENDOCRINOLOGIST, BUT NOTHING WILL COME OF IT.”

We were dismissed with the backward flip of his hand, and yet again I was left holding a toddler in one arm, and a crazy 9 year old in the other (who at this point was incessantly jumping up and down like a yo-yo), tears of frustration spilling onto my cheeks and embarrassment at not being able to control my tiny offspring and my self confidence tossed aside like I had presented myself like a neurotic mother.

As it was the summer holiday season, appointments were very fractured, and when I rang to enquire, I was told it was going to be in 5 months.  It was at this stage that I decided we would go privately.

After going home I decided to look to see what tests the Endocronologist would be doing, and when I got down to Turner Syndrome, my heart stopped, and by the time I had read the list of characteristics and symptoms I knew.

Thankfully there was The Support Society, which I rang immediately and spoke to THE Oracle Arlene, who I even sent a photo over to see if it would help.  Between us, we managed to get an appointment in four days at Birmingham Childrens Hospital.

The appointment was fairly straight forward, and he said he would ring me with the results.

10 days later (and yes, they were the longest 10 days of my entire life), the phone rang, it was our wonderful Consultant, who was so good, and delivered our life changing news with heartfelt empathy, something that I will never forget and be forever grateful for.

Meg did have Turner Syndrome, and from then on we hit the road running….

Please, please pause and think before you deliver a diagnosis.  Don’t be blasé, just because of its familiarity to you.  The prepared simple and matter of fact way you deliver diagnosis to parents will stay with them forever.  Sympathy and empathy are not difficult to give, but in the throws of despair are the hands of comfort, which will be remembered always.  And can either make or break how the news is accepted.

Finding out that your child has been born with a disability (whatever age they are diagnosed) can be the most traumatic moment in a parents life. Newly diagnosed parents are in shock.  It can temporarily paralyze you, prevent you from taking action, or even  making rational decisions.  You are in mourning.  The devastation that is felt is insurmountable, and although we manage to ‘hold it together’ in front of our girls and you at appointments, let me tell you – we are heartbroken and grief stricken beyond belief. And absolutely frightened about the future.

Parents need educating in the complexity of their daughters diagnosis, things that are not important while they are babies will be very significant later on.  Of course, not everybody has everything, but one must be aware of what could be occurring at one time or another. Every girl and woman with Turner Syndrome are unique, and each one must be treated accordingly.

I am lucky.  Meg is lucky.  Our family is lucky.  We belong to the Turner Syndrome Support Society.  Without whos guidance, I would seriously question my ability in parenting.  Knowing that there is ALWAYS a friendly, knowledgeable person who I have complete trust in on the end of a phone is invaluable. We have made true friends for life within the Turner Family.

Meg has Mosaic Turners, Hypothyroidism, Scoliosis, Hearing Issues, Lymphedema, heart murmer, bicuspid aortic valve, intracranial hypertension (she is shunted), and postural orthostatic tachycardia, she is also a very beautiful, intelligent and eloquent young lady.

We have good days and not so good days…Some days she cannot stand up.  Now she has turned 18, Our lives have changed yet again, but with the support and guidance we receive so readily from the Society, all our lives are bearable.  As a family, we are able to function – and that in itself in our circumstances is pretty amazing.

As well as dealing with our own emotions, and concerns for the future, we also need to provide support and advice to other family members, our care within the Turner Family is constant, not just a 20 minute appointment slot.

Transitional stages from Paediatric to Adult care can be a bit hit and miss for us,  Endocrine has been superb, but Neurosurgery absolutely shocking.  Life long healthcare one hopes should be consistent.

I am very aware that the journey of a parent is very different from that of a woman or girl with Turner Syndrome.  The only definite similarity is that we both require knowledge to ensure the path our lives take - enables us to be confident in the understanding that what the Support Society and Angelas Legacy have achieved so far, will continue to see future generations of beautiful girls and women with Turner Syndrome looked after to the best of all our abilities.

And for that we must be truly grateful.

Anyone can give up, it’s the easiest thing in the world to do.  But to hold it together when everyone else would understand if you feel apart, now that’s true strength."