Let me begin by introducing myself and my family. I am Clare Lally, and I live in West Dunbartonshire with my partner Derek and our beautiful twin daughters Holly and Katie (the Twincesses).
The Twincesses are now 6 and like all families our kids are our life. We would do anything for our children and that’s exactly what I am going to be blogging about.
You see one of our girls has a life-threatening condition (bulbar palsy) and requires 24-hour care. She also has quadriplegic cerebral palsy and is unable to walk, talk and her life-threatening condition means she is unable to swallow and protect her airway and she is a silent aspirator which means she is always at risk of choking – hence the 24-hour care! She does have other things like severe gastro reflux, duplex kidney system and a lower field vision impairment. This does not stop her determination and fighting spirit to achieve things in her life. She is our inspiration and hopefully over this blog she will be yours as well.
The Twincesses were born 12 weeks premature, weighing just over 2lb each, and from day 1 it was apparent that Katie had complex health needs. As Holly was thriving and gaining weight, oor wee Katie wasn’t.We spent nearly four months in hospital and a lot of medical training for us to pass nasal-gastric tubes and suction machine training (the suction machine clears anything from Katie’s mouth to lessen the risk of it going back down her airway).
It has been a long road that we have been on with a lot of obstacles and brick walls in our path. I know what you are thinking, these obstacles must be about Katie’s health and needs, right? Wrong! It’s the constant fight and battle that we have to go through to try and provide our daughters with some kind of quality of life.
Because of this constant battle I am now a very active and successful campaigner and advocate. I campaign for the rights of unpaid Carers who are doing all types of Caring Roles. And thats what I am, thats how I see myself ‘a Role’ not a mum. What I didn’t mention at the start was that I can’t have children, myself and Derek went through IVF and it was our second attempt that was succesful and the feeling that day when we had our first scan and we could see the nurses looking and whispering at each other we thought Oh no there is something wrong! But we certainly were not expecting to hear the words “Your having Twins” I just wish I could have bottled that feeling and every now again when things are really bad we could open the bottle and let some out!
We wouldn’t change our lives although there at are times when i look at the Twincesses and I think that even all I do for them is not enough, I feel that sometimes its like being a robot programmed to do certain things at certain times like making up feeds, administering medicines, doing physio, practicing Makaton – Some days I just want to be a Mum! But, what exactly is that ‘Role’? Maybe we are just to hard on ourselves..
But, I am hopefully going to bring some reality that some of you will or can relate to! Maybe some have never had to experience any of the issues that parents and carers have to? Who ever you are reading this, I just hope you enjoy coming along with us on our journey as much as we will enjoy sharing it.