Wednesday 23 May 2012

Beginning

My name is Rachel and I am the mum of a very special little boy. His name is Lachlan he has an extra 18th chromosome. This condition is called Trisomy 18 or Edwards syndrome. The life expectancy of children with Trisomy 18 is usually short so short that most people have never heard of the condition. Lachlan is defying the odds he has passed the two week expectation he recieved when his diagnosis was confirmed at 12 days old. He passed the one month mark and the five month mark when he got the pneumonia that he appartently shouldn't have survived. He turned one something only 5- 10 % of all children with trisomy 18 get to celebrate. He has just turned 22 months which encourages us that he will be still here to celebrate his two year old birthday with us.
Why blog? I have been close many times but Lachlan recently had his first surgery and I promised myself if he came through I would start. Other parents blog about their children with T18 and I enjoy reading their blogs and see the value the record can provide for a life that may not be measured in years. Emotions can be mixed and complicated and recording can provide clarity. Also there is the desire to provide that spark of hope that may be very elusive to fellow parents finding about this condition for the first time. Also to give and gain support from others on this journey.
I hope to use this blog to track Lachlan's progress,sort through feelings and provide insight to myself.