Clare, Derek and the Twincesses
Hi everyone, thank you for taking the time to read our blog, I hope you enjoy following us on our journey as much as we enjoy sharing it.
First of all I am Clare Lally, and I live with my partner Derek Steel of 9 years (omg) and we have the most beautiful twin princess daughters called Holly and Katie (hence the twincesses) who are at the moment just over 3 and a half. After trying for a baby for some time, it was felt our best chance of conceiving would be IVF, so after 2 cycles we were given the best news in the world that we were pregnant, the following month at our first scan showed it was twins! I really wish I could have bottled the feeling I felt that day, because there has been times in the past few years that I could have been doing with it!
The twins were due on 17th March 2007, but 12 weeks early on the 27 December 2006 my waters broke, and after a long 34hour labour I gave birth to Holly first, she was taking away and ventilated and taken to intensive care, 50minutes later wee Katie was born, there was no noise when they told me I had another wee girl, it was silence! They both weighed 2lbs. The next thing I knew she was taken in an incubator up to intensive care, while I was taken to recovery. As a result of the traumatic birth Katie had, and the fact I was not given a section, wee Katie suffered brain damage (PVL).
A lot happened in the following weeks, Holly grew stronger while Katie didn't, it was in these weeks that we were told Katie had Quadriplegic Cerebral Palsy, Bulbar Palsy (no swallow/suck). We finally got the twins home on the 29th March 2007. What a day that was :-) Katie has not had an easy time in her wee life and there has been more conditions came to the surface, these are Cerebral Irritability, Duplex Kidney System, Lower field vision impairment, Severe gastro- reflux, Separation anxiety, Behavioural issues, sleep disorder (Katie has never slept at night and very rarely sleeps through the day). But she is a fighter and a survivor, and I don't know how she does it but her fighting spirit gets her through which is all that matters.
I have taught the twins Makaton, which is so funny and lovely to watch, Holly just loves her wee sister and so caring towards her, Katie just loves Holly, she wants to do things that Holly does but gets frustrated when she can't. Katie can sit up on the floor on her own for a wee bit, and can bum shuffle on the floor. These are huge achievements for her, things that we were told would never happen, so please Never say Never!
I am a full time carer and mum to Katie and Holly, she needs 24hour care, and she gets it! She requires frequent suctioning and because of her inability to swallow she can't protect her airway, so she is always at risk of choking or aspirating, so myself and Derek take shifts through the night so she always has someone watching her, and I am with her all day as Derek is at work. We wouldn't change a single thing about our lives, but what would be nice is if we had more help! I spend a lot of my time campaigning and fighting for the rights of disabled children, I was awarded Scotland's 'Mum of the year 2010' which was a huge shock but I was so honoured to receive it. So my job is to help you and your family, which is one of the reasons I am taking part in the diary project, I don't want families out there feeling alone and isolated because you are not, if I can make any difference at all then hopefully for the families that come along in the near future their lives will be a lot easier.
Hi Everyone, Jeezo it's been a while hasn't it? Hope you are all ok? I always feel when I find the time to do my blog I always have to re-introuduce myself again! But I have so much to Blog about and to share I just want to get started............
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