Providing support to people affected by Turner Syndrome and their families in New Zealand
Providing support to people affected by Turner Syndrome and their families in New Zealand
The carpet was brown and red with small gray diagonal shapes evenly distributed on the acrylic covering. The room was sterile which contrasted the homely and dated carpet. I wanted to be absorbed by the carpet rather than listening to the words Turners Syndrome for the first time. A simple drawing of chromosomes explained my future away. I’ve been found out! I’m not a lady, not even a girl. Once again the carpet took my eye. My mind was calmed. If I don’t look at the doctor then it isn’t true. Rather juvenile coping strategy for someone who hasn’t attended primary school for quite sometime, in fact my day’s of high school were coming to an end.
The rest of the meeting was a blur. My frozen body sat upright in the car set returning from the clinic as my mother tried to provide me with words of reassurance. Normally she can speak logic however this was not the conversation that she was prepared for. A fathers help was required with the aid of the internet. Information was drip feed to me as I could handle over the next few months.
Sure the words TS came as an unwanted shock but really life does goes on and in the same way that everyone else’s does. The 16 years of my life was now made clearer. My appearance, stature, learning style and ear infections now fitted into a complete jig-saw. I was glad it was this way rather than a life sentence in front of me from birth tagged with a list of symptoms. What the doctors forgot to mention was turner ladies lead a full, successful and mostly healthy life
Mole, shortly and nosey are all names that I’ve been called. “To what privilege do I deserve these insults” I would ask my Mum?
Why are these people insensitive to by condition?
Why can’t I enjoy school?
I look at the teacher but don’t really listen.
I tried hard but the words get twisted around in my head.
I was friendly but friendless I didn’t get the social sophistication.
People told me high school finishes and life becomes smoother. Some blame the hormones and hope the teenage years don’t scar. Truth be told; it does get better after school is through. Furthermore friendship issues occur among girls regardless.
I was told that people just like me existed. What was more was promising was the prospect of meeting them. I entered the house where the ladies were having lunch. It dawned on me that I was not craning my neck to talk to them. They were short, friendly but most all noisy. These were my type of people. I felt at home with my long lost sisters. We had shared so many similar experiences. They knew how it felt to be me because they had walked in my shoes, at least in the same size! It gave me confidence to accept myself not as a mutant but as a member of a group of extraordinary girls.
Infertility seems so cut and dry. Barren, not just an empty womb but heat, sole and home. I thought if I rushed life then perhaps everything would go according to plan. If I studied hard, get a good job and are a good person then nature would take its course and I’d have a baby. After all has my life not been in preparation for that stage? Firstly child's play of mummy and daddies at primary; sex education at intermediate, babysitting at high school and dating at uni.
Now as an adult I am left with a monthly reminder of what should be but what is not. Friends give you futile advice like “who wants kids anyway, you can travel”. Parents believe you are just a child yourself. They have never known the gut-wrenching desired to enter motherhood, after all they had you.
The best advise I’ve heard is there are other ways of having child and even pregnancy will still be apart of the process. After all most TS girls are expecting, anticipating and wanting for far longer than most. I know when it comes time to marry someone it will be a hard conversation but it will be worth it.
I need to remember I would not love a man less if he was infertile. Often there are times when life seems unmanageable but if I put one step in front of the other then I’ll be going on a journey. At least it will be a road that I choose and not automatically put before me.
Anon.