Wednesday, 25 July 2012

Trisomy a positive experience

Feels like it is an exciting time for the trisomy community at present. A study of parent responses to living with there children has been recently published and overwhelmingly the parents reported their children enriching their lives and leading happy lives themselves. This is in contrast to what many people including myself are told during the pregnancy. In my case since I did not confirm with an amino that Lachlan had T18(he received his diagnosis at 12 days old) it was in the form of subtle conversations during my high level ultrasound scans. Comments like "Termination is still possible if you had an amino and found T18" and "You do have other other children you know" and " if we do and amino and find T18 you wont be able to have a c section". However I was never really pushed and I did have a wonderful OB/GYN who respected my decision not to find out but was still preparing me that Lachlan would have some issues. He also is blessed with a wonderful Paediatrician who values him.
If I could go back and advise myself or give the doctors advise on how to approach someone who decides to carry to term (as opposed to deciding on termination) I would have like to be told your journey will be filled with challenges BUT your child will be worth it no matter how short their life may be, you will have the opportunity to met some of the most inspiring people on this journey- the other parents who share this unique journey, you will grow as a person and surprise yourself with your ability to cope and your eyes will be opened to the unique people who live with trisomy and other severe disabilities.
If you are part of the trisomy community you may have already seen these but if not may I recommend Jill's  blog titled July 23,2012 we have a voice and

Where you can read of all the people behind these exciting articles.

I truely believe as a society we will become more inclusive and better informed and technology will help us do this as we are able to read each others stories. Life is challenging for us all at times together we can make it easier.

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