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Tuesday, November 3, 2009

Understanding

I'm having difficulty uploading the video, so I will just add the URL here so you can link to YouTube to view it. There was a lot of buzz last week about Corey Haas. He was on Good Morning America, explaining the gene replacement therapy he received. He's 9 years old, has LCA, and was involved in a study that left him with sight. It's pretty inspiring, hopeful as well as emotional to watch this. We all know, my hope is for my son to one day have some vision. I cannot but help to put myself if his mother's shoes. I also cannot help to think that may one day be Gavin.

As I watched this, with a very heavy heart, the only thing I can think of is "we are on the brink of something amazing happening, sooner rather than later." The articles I have read 8 months ago, compared to what I have recently been informed of, just in those short few months I have seen progress. Whether it be more awareness, or younger participants, etc. Maybe I am just more aware, but the momentum is continuing, and I will do my best to raise awareness in my little corner of the world.

Let it be known. Gavin was created by God, just the way he is. I love him just the way he is, I accept him as he is, I treasure him. Just as he is... which is perfect. I have said it before, I will NOT let his vision impairment hinder him from being the best person he can be. I also will NOT let it define who he is. He is more than his disability, it is only a fraction of who he is. These are words I have said many times, but they are so true. His world, his life, is not any less meaningful than any of ours, just because we do not live in the darkness he does. One day, this gene replacement therapy may be the norm. I have to prepare myself with the reality that he may choose NOT to have it. I will respect that and we will continue on.

I speak so highly of gene therapy, for one, I am in complete awe with what researchers, doctors, etc.. are capable of doing. And, two... to give someone sight, I am just speechless. I am speaking from a parents view point here, and not someone who lives with a visual impairment. I know there are two different views on this topic, and some of those views, honestly, are quite shocking. It just shows how much I am learning, and how you truly cannot judge one's position in life without living where they have. There are people who live with a visual impairment, who accept the impairment, and do not view it as a hinderance, or as something they would want to change. On the other side, you have those who would jump at the chance to see a little bit more. Of course, for my son, I am on the side who would go to great lengths to do whatever it takes to give my son more vision.

I will also sit on the other side with him, if he one day chooses not to go forward with therapy, if he is so given the chance. I hope to one day have this be an option for him, but I have learned, what I want more than anything is to understand. I want to understand his perspective. I will always respect it, but would love to understand. I'm sure he will show me, he already has, and I am going into this with a complete open mind, letting Gavin and God guide me down this road.

As a parent we want to fix, fix, fix our child if we can. Fix the broken bike, fix the scraped knee, fix the bump on the head, fix the blindness.

Now as a parent with a child with a vision impairment, all I want is to understand, understand, understand. In my eyes, Gavin does not need to be fixed. He is just as he should be. Would I like him to see more? Definitely. If he chooses to make that decision not to, and old enough to make that decision, would I support him? Definitely. He is who he is, just as he is.

And I will understand.

3 comments:

  1. You are so so right. I feel the same about Jordyn, am i pushing too much, not enough? There are no handbooks given to parents who have blind children and you said it best. I will let god and gavin guide me. I miss your posts because you truely inspire me. Please continue sharing your journey.

    Mikael

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  2. I totally forgot about your blog until I read your comment. Im so glad to see that you are able to stay positive and also decide to look at things positively. I was just browsing through your posts and glanced over at one when you were questioning the people who stare! I totally get that! I still cant stand people staring or saying rude stuff, I dont mind if people have actual questions and have the "balls" enough to actually ask a question but stares and comments get even more on my nerves now than before, maybe its because it gets old after just about 3 years. My son is always wearing his "cool guy glasses" (sun glasses), so we really dont get as many comments on his eyes as we used to. Im sure there is so much we both can relate to regarding our sons.

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  3. Luvin this post!
    ~amanda~

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