Thursday, February 18, 2010

Relating to someone I will never meet.

Have you ever started reading something about a stranger, yet you felt like you have known them your whole life. As you are reading about that persons struggles, pains, problems and joys you feel like you could have wrote that about a child, friend or partner. As you think about how stressed out you are, you begin to wonder if maybe you are not the only one on this planet who is going through everything within the daily grind in your 'normal' day.

Maybe there is hope for me and someone who can relate to what I am going through, now I don't expect that I will ever meet this person that wrote the book that I am reading however, whether or not I know that we are connected.

So before I continue I guess that I should state the name of the wondrous book for me: Spelling Love with an X, by Clare Dunsford.

This book was bought for me by a good friend and my son's therapist as a gift, I am always into reading and learning more about the genetic disorder that I passed on to all of my children. My son took the rougher end of it because he only has one X and his mutation of the X Chromosome is rather high, which gives him the moderately to severely mentally disabled.

I have began to read this book the women stated that she knew that there was something not quit right with the way her son was responding to everything and that she knew that her son had something that made him different and that made him special. I felt the same way about my son, now I know that every parent thinks that their child is special in their own way. But the kind of special that she and I am talking about is something completely different, Xavier didn't act or show emotion to me the way that my daughter had.

Our bond was missing, I loved my son like no other but the connection that I felt with Nicole was missing. At first I thought that maybe it was me and I was the cause of this problem, that Xavier and I didn't connect the way you hear about with a mom's boy. Now don't get me wrong he is my love and my only son but he never really had held a connection the way that my girls do. Clare talks about the same feeling and this gave me a warmer sense that this maybe a common issue with X, (for the duration of my writing I am going to refer to Fragile X I am just going to refer to it as X). I have read may articles and books concerning X however, reading something from someone who is living with it and not just a doctor who has done research.

As I began to read about her concerns towards her son's development and the feeling that she was the reason for it and back when she was first told about it and her denial towards the possibility, I saw my first reaction towards the doctors orders for the blood work.

Once he got tested and we were told to go see the genetics doctor, they gave me information about X and things took a long history. While there I wanted to point the blame of what was wrong with my son on his 'father' as well. However Clare like me forgot basic science and that X chromosomes are just passed to the son by the mother.

Now all of my kids have the mutation and my daughters don't have the full mutation, however if the ever have kids they are looking at a 50/50 chance of their kids having it. I know that IF I ever have a child my odds are higher because of all of my children mutation.

Clare understood that she would have to sit down and have the 'talk' with her family and I would have to do the same. I talked with my mother because I knew that if she had it all of my siblings might and this would need to be something that is talked about with them too. However, because I am a girl and I got both and X from each parent it was concluded that I must have gotten it from my 'father'. This would help me to understand later while my mother told me about my 'father's' side of the family and my uncles disabilities. This is a disorder that is hidden and like a nasty infection is will show itself when it is ready and some may end up with X and others can live a while life and never know it. My grandmother most likely never knew that she had it and if I didn't ever have a son I would probably be in the same boat.

But at the end of the day I know that I am not alone and I can do this! I am going to continue reading this wonderful book and maybe mention her in the blog from time to time.

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