I am struggling this week to hold it together. Lots has happened, just minor things really, that have all piled on top of each other and resulted in me feeling overwhelmed by it all.
Pathetic, I know.
I am having battles with EMA (the people that help fund college students) Shirehall in Gloucestershire (pay for the school transport) and a consultant at our hospital. I feel like I am invisible, I don’t matter and that they don’t care about me or my family. It is so frustrating.
Briefly, Shirehall pay for my 8yr olds school bus. However now he is 8 they deem that because we live under 3 miles from school he can now walk this journey or we pay. Two doors down fought this and have never paid for their children as the council agreed it was too dangerous for an adult to walk this route, let alone a child. That doesn’t apply to us though, they say we have to pay or find alternative arrangments and they aren’t budging on it. In the meantime the neighbours put their children on the bus for free??????
EMA refused our claim for financial help for college. HB ticked a wrong box because the form was very confusing and they sent it back with a ‘refused’ letter but not an explanation as to why. After lengthy chat with a very rude receptionist yesterday I managed to get her to explain that a wrong box had been ticked. \She originally told me I earned too much but as their cut off was £30,000 and we don’t even bring in £20,000 jointly I told her she didn’t know what she was talking about! So now we have to reapply, we can’t just tick the correct box. We have to reapply!
Hospital! OMG those people are known as professionals aren’t they, the ones who work in hospitals?
What they think they know and what they do are usually 2 very different things. Up until now the consultant that sees my girls has been wonderful. Kind, polite and to the point except on one issue.
She has always said the girls will need genetic counselling, so she can explain to them about their hereditary disease and how exactly it is passed on and how it will affect them in their lives when they think about children etc. I agree on this but I have always said I think they should be explained all this to ‘properly’ when they are older. They know the basics and that is fine but the ‘whole truth’ for want of a better phrase should be told when they are old enough to embrace it, understand it and not be scared ‘s******’ about it. I have fought to stop her telling them at a very early age and have always maintained that they will know when they are grown up enough to deal with it.
Basically if they have children they will pass on the disease and so the medical professions answer is to:
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‘Not’ have children
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Adopt a child
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Have someone else’s egg implanted but their husbands sperm is used to fertilise.
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Abort the baby after a test that can be carried out at 11 weeks, if it has the disease and this can be done multiple times
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Go ahead normally but they really don’t advocate this route as its unfair on the child and is it right to knowingly give a child a disease!
As you can imagine, as an adult this is a huge thing to have to get to grips with, especially if you definitely intend to have children as my two do. To be told all this at a young age is potentially devastating, irresponsible and completely not necessary I think. So I have kept this ‘meeting’ away…that is until now. My daughters are now just 16 and 17. I think this is still too young as they are not at the age yet where they want children, are in a serious enough relationship or even understand the whole issue of genetics and how it will affect them personally. I begged the consultant to leave it be for another year or 2 at least as both are in college and not planning on having a family just yet. 
Do you know what? I apparently have no control over this now as my girls are above 16 (by 2 months only for HB) and she doesn’t need my involvement anymore. In fact she doesn’t have to tell me anything, it’s private, confidential and all that crap.
So she tells them.
Now you tell me. Who did they ring in tears when they got out of there? Who was shouted at, screamed at, questioned and told it is all their fault? Who is going to be there when they actually make any of these decisions? Who is going to be looking after them if they get into ill health and have kids that also need looking after? Who is going to hug them, reassure them, love them, help them, be on the end of the phone in the middle of the night when those questions haunt them time and time again? Well it’s not going to be her is it. How DARE she say I have NO involvement in their care now, she doesn’t HAVE to tell me anything!
This is so wrong. So very wrong.
RB told her boyfriend all about what happened at the meeting because she was truly distressed and instead of getting sympathy or understanding form him, as she was expecting, he told her that there was NO way HE was having a handicapped baby (his words) and so she would be aborting any baby with any defects! The poor girl was absolutely devastated and crushed. They are too young to be thinking of babies but this threw a light into their relationship and how it might pan out for them in the long term and has added lot of pressure that they didn’t need.
HB on the other hand has been worried about whether anyone will ever be interested in her now. Will she ever get married, will she ever have children at all as she planned. She is just 16, she should be having fun in her relationships. The teenage years is when you date those people that you think you love, you do anything for them, you enjoy it heaps and having babies and being serious is something you don’t think about. BUT no, now HB thinks she should tell the boy from the off set and then she thinks of course…he will run.
So thank you Mrs Professional. Thank you very much. You came, you spoke, you broke them in two and then you left. You broke MY BABIES’ dreams in two.
So professional, I think not.
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