Guilt

There are many days I feel a lot of guilt about Austin's diagnosis.  It's passed on through the mother so in a sense it's my fault.  I know it's not really my fault.  I know I didn't cause this and there was nothing I could do to prevent it, but it came from me...it's my fault. 

Since Austin is the only male we know in our family that has this disease we can be pretty sure that it does not run in our family.  There is a 50/50 chance of passing it on so surely someone somewhere would also have it if it was in our genes. 

There are 2 other reason why Austin has this.  In 33% of cases there is a random mutation of genes that causes this.  There is no explanation as to why this happens.  The other option is that my eggs have the mutated gene.  This is rare.  The doctor said that in this case it would have happened while I was forming inside my mother. If it's in my eggs...this can happen again. 

The genetics doctors want me to get tested to find out if I have the gene.  I haven't done it yet, because I am not so worried about it.  I don't think I do.  Of course I will still get tested the next time I go to the doctor to be 100% sure.  I'm just not sure what scares me more.  Knowing I have the gene or knowing I don't. 

Some days I think about having more children in the future.  It would be great, but I'm scared.  If I knew I had the gene I could do in-vitro and and make sure no future children have this gene.  But I'm pretty sure I don't have the gene which means I would have to leave all future children to chance.  How could I do this to another child?  What if it is my eggs?  There is no way around that.  What if the random mutation happens again?  Knowing what I know about this disease and what Austin's future will most likely hold I could never do that again.  I already have enough guilt for this happening to Austin.  I can't even imagine the guilt I would have doing this to another child.  That is what it would feel like.  Knowingly sentencing another child to this life.

I hate that so many of my posts are so sad and down.  But it really is helping me cope and get things off my chest.  When dealing with a fatal genetic disease there is going to be a lot of sadness.  But there is a lot of happiness in our lives too.  I am so grateful for the joy this amazing little boy brings me.