Science marches on, and recent advances have made it possible to automatically analyse the human genetic "blueprint" in detail. Yesterday we received a letter from our geneticist letting us know that both Michael and Elise have chromosomal abnormalities. We don't know what yet as we are still waiting to talk to the geneticist this afternoon (why are these letters so vague?!). Of course, part of me felt massively relieved to think that at last we might begin to understand our children's conditions. Whilst we have always been aware that Michael has a syndrome of some sort, not knowing what this is makes the future that much more unpredictable. In his eight years we have seen the emergence of various elements at different times, including ASD and kidney problems. Are these related or is our son the 'victim' of multiple things? Is there anything else which is going to raise its head due to this invisible condition which he has? The genetecists have asked for John and I to give blood samples to try to understand what has caused the anomalies in Michael's chromosomes. I chuckled when I read the label stuck to our sample packs we received - "For chromosomes and fish"!
Elise is slightly more complicated as, being adopted, it makes it much harder to fit together the jigsaw pieces. Whilst John and I can toodle down to have our blood samples taken, this is not easily possible for Elise's birth parents as we do not have any real contact with them. The geneticist has asked for blood samples if possible nevertheless so we have to tread carefully, making sure we leave no paper trail back to us. I hope they choose to help for Amy's sake, but we will have to wait and see. I don't know how they have handled things and it may well be too much for them so we will not judge but I really hope that they do. For Elise particularly, if she chooses to have children it will be so important for her to know how her condition may affect them, if at all.
At the end of the day, the more information we have the more we can understand our children's conditions. Do I want to know? Yes, but sometimes insight is a scary thing. Will it change my children's conditions and the way that I feel about them? Absolutely not. Whatever the reason for my children's problems, I do and always will love them. A lady said to us yesterday that we were 'unlucky' to have two disabled children. What does she know!! Whatever my children’s eventual diagnosis and no matter how noisy, frustrating and wearing they can be, I count myself as far from unlucky, as what is greater than the unconditional love of two fantastic children? Beats me!