I look back at my blog posts and they seem like I wrote these a life time ago. I see so many errors in punctuation, grammar and context... I didn't start a blog to become a great writer, rather I started it because I believed in the unknown. I believed that the power of love would conquer it all, and I still believe that today. But, why did I stop writing you may ask, and my simple answer is because I felt like there wasn't anyone really listening.
For me autism was a very lonely world. I slowly lost many of my friends, and I thought I had lost a piece of myself. I become so obsessed with biomedical that I couldn't think or talk about anything else, it became who I was. I quickly learned not everyone agreed with what I was doing, and there wasn't anyone to turn to for answers.
As I look back on it all I didn't give up on my friends they gave up on me, as I tackled autism their lives continued. I also didn't lose myself, I became someone else. I became a soldier, and as much as I dislike the term I became the warrior mom. There were many days I felt and still feel like an army of one. I always felt and still feel I am at a continuous battle with medical professionals. I often wonder if there is even a such thing as a good doctor any longer. I am sure there is, but they seem to be very far and few in between.
I glance back at my posts from a year ago, and see where my daughter was in those moments in time. Remembering those times are painful, it breaks my heart to see the struggles my baby had to endure.
We are at a different point in our lives, and in some ways I am still at battle. I am proud to say we have not hit regression. I honestly believe we are beyond that point, but I don't think the fear of the possibility's of it will ever leave me.
If I only knew then the battle that was truly before me, I don't know if I still would have believed we could do it. Gabby was diagnosed with a rare genetic disorder 1q21.1 deletion. I am still learning what this means, and the things the future may hold. This isn't like starting biomedical, the resources are very limited. The doctors we have seen know very little about the chromosome depletion. Once again I find myself frantically researching, this time there aren't any success stories of people that have over come it, except us! Many of the medical issues that are associated with this depletion we have already overcome, because they were the same medical issues children with autism have. There are many children that are in far worse positions then Gabby is, and that is because I will never stop questioning things, and I have learned food and vitamins play a major role in the outcome.
I want just like any other parent wants for their child, I want to help and protect her. The possibility that one day I may not be able to scares the crap out of me. I know I should not focus on that, I have to focus on the fact we have already done what many claim to be impossible... so why can't we do it again?
Nothing is impossible the word itself says I'm possible!
I read up on the 1q21.1. I didn't know that you had gotten a diagnosis. I saw that it can cause autism. Seems like you've already defeated a major aspect of it and I'm sure you ca conquer it all. Take care tracy
ReplyDelete