When we Were told we were having twins obviosuly it was the best news & feeling in the world, we had gone through hell and back just to be blessed with one - let alone been blessed with 2 angels.  Although I shall maybe refrain from calling them angels at the moment until they both realise they are 4 and not 14!  LOL  What happend to the Teletubbies & Pooh bear??  Now it's Hannah Montana & make-up - Time really does flies by.

We had this painted picture or image if you like as to how our lifes were going to be when the twins came along.  We had picked 2 cots, 2 moses baskets, 2 bouncy chairs, 2 high chairs, loads of bottles etc.... A beautiful twin pram that I just could not wait to get out and push around with the twins in it, in fact we used to go to the shop we ordered it from everyweekend just to have a shot :-)  Derek would say oh clare not again lol..........

So, when I went into premature labour at 28weeks, we had no clue what lay ahead, all we were  concerned about was whether the babies were going to be ok.  As I have briefly explained in our introduction, Katie didn't have a great start in life with her health, and it hasn't got any easier.  But even in the hospital when they were testing her for every condition & genetic & chromosone disorder, I really didn't think 'oh my god what if she has it' all I could think was 'ok, if it comes back that she has it that's fine, but please will she be ok'.  So when all the tests always came back negative, I would think great thats good, but they were starting to run out of tests, thats when I thought please come back positive with something, at least that way we will know whats wrong with Katie, and exacty what we have to do to make her better.  It didn't quite work out like that.....

When we were finally told Katie had quadraplegic Cerebral palsy & bulbar palsy, my first question was "is she going to die?" thats all I was worried about, We could handle and deal with anything as long as it means we don't loose her.  The doctors couldn't answer us, in fact 1 doctor told us Katie wouldn't see her first birthday.  We have taken the twincesses back to that hospital every birthday to date!  It was explained that Katie's Cp would mean she would never walk, and her arms at that time were very tight & her fists were always clenched, her bulbar palsy meant that she could never swallow - she could never eat! She would never be able to talk either. 

 We were taking it in, it just wasn't processing.  I can remember thinking I'll never hear my wee girl call me mummy, that was harder to deal with than thinking she wouldn't walk or talk, now that may sound selfish to you, im sorry if it does.  But.. im now going back to were I said we had painted a picture of life with our twins, I never once for a minute ever thought what if..... I pictured the 2 high chairs with the twins sitting in them, im spoon feeding 1 out of one bowl, then spoon feeding the other one with another bowl, I pictured haveing them both in my arms, trying to hold a bottle of milk in their wee mouths without spilling any....  Where do we get our ideas from - Now im picturing 1 high chair, 1 bottle, 1 baby!  That wasn't part of the plan, what will I do with Katie, how will we feed her?  We had lots of questions to ask, the majority did get answered.  We had to learn how to pass naso-gastric tubes down Katie's nose, this is how we will feed her - with syringes of milk down her nose, also all her medicines would go down this tube also - Katie was nil-by-mouth she still is, we also had to learn home suctioning, Katie required suction all the time and she still does! So there was lots to learn before we could get our babies home, but we did it, we managed and haven't looked back :-)

I had never really known anyone who had a disabled child, to be honest at that stage I still didn't really know myself that Katie was going to be a 'disabled child'.  I assumed that we would get help, hahaha my god I have never been so wrong about anything in my entire life.  Asking the social work department for help is like asking them for a million pounds!

WE lived in a one bedroom house when we had the twins, in fact the day we got our ivf results (7/7/6) was the day we got the keys to our house, as we were totally convinced that the ivf wouldn't work again! So just after the twins first birthday, we couldn't live in the cramped house any longer, by now Katie had a tumbleform chair, a monkey standing frame - plus we had Holly's moses basket, &  bouncy chair - We didn't need the other one....katie had her wee special seat.  We saw a 2 bedroom house, which was still in our wee village - cut a long story short, we sold the house we were in and bought the other one.  Once we had done all the work that was needed and had moved in and got settled, the social work occupational therapist came out to asses the house.  The report reads "Katie needs a ramp, a stairlift, a bath aid, a downstairs toilet and sleeping area - the house is not suitable for Katie unless the adaptations is carried out.  but as the family own their home they are not entitled to help from the council as they are homeowners.  Excuseeee me, what does this mean??  Yes  I had read right, Katie gets penalised or discriminated against because her parents pay a mortgage and not rent!  What is the difference - Since when did our kids start being means tested! 

I took it further, I complained, I lost the plot and the will to live as no one could answer why Katie was not allowed any help that was  needed just because we owned our house.  I asked for a council hosue, but we weren''t on the list and they didn't have any anyway.  What else can I do?  I was then told from the sw o/t department to take it up with the government, and thats exactly what I did!

That Ladies & gentleman, is what spurred me on to the campaigning I do - The fight then starts in my next blog!