This year, we learned that Jack has even poorer vision in his right eye than we'd thought. He is actually legally blind. We worry about the best way to teach him to read, how this will affect his life....can't wait to be on the other side of the worries over this one! Keep us in your prayers.
I want this blog to be real. It is about the real life of a great little guy who continues to amaze me as he adapts to the world around him. Well, I wouldn't be real if I wasn't honest enough to tell you that today the vision thing and all the other things hit me hard today and I cried. I cried because it's not fair. I cried because I want to make everything right and perfect. I cried because I feel like if I'd only done better for my little guy, he would not have to go through so much. I cried because there are idiots in the school system. [All the while acknowledging that there are good people there too.] I cried because I did not think that anyone else could understand.
I think back to the past two years and I cried out many times right here on this blog about that CPAP. Here we are now and Jack's latest sleep study was fabulous on the Bipap AVAP. Dr. Fearon says that the two things he most worries about impairing the development and cognitive abilities of kids with Apert syndrome are taken care of for Jack--excess pressure on the brain and not enough oxygen to the brain while sleeping. All that crying and God had his hands on my family the whole time!
I'd love to declare that I am done crying and from here forward I put all my trust in the Lord, hallelujah! But you and he knows that I'm not that good.