• 2013,  rants'r'us,  reflection

    I want to be Mom

    and only Mom. I forget how to be “Mom” now. I’m a physical therapist, speech language pathologist, vision therapist, occupational therapist, researcher, advocate, and all around president of the “Noah corporation”. I’m learning a new language in hopes I will be able to break into my son’s world and let his voice out one way or the other. I’m so much more than I ever thought, or wanted, to be. I just want to put all those other roles away and just be Mom. Nothing else. I want to worry about the amount of food he is or isn’t eating and not panic about weight gain and the amount of…

  • 2013,  BabyA2012,  Pics,  videos

    Noah is 1!

    Today Noah turns 1. I can’t believe it. It’s a lot easier to put pictures together than the words (still working on it). But I wanted to share because I’m so proud of my little man and every thing he is becoming. It’s been a hard year but he amazes me and everyone who knows him every day! Here’s the link of Noah’s birth story I wrote while we were still in the Children’s Hospital last April: Birth Story The entries I wrote about this amazing man and difficult road we were given: Some of the Past Year with N Happy Birthday, Noah! We love you!

  • 2013

    Eye see you

    You’d think after all these months of eye appointments and retinal pictures and pupil dilating someone would have thought to mention that Noah also has bilateral retinal colobomas as well. We were talking to our opthamologist today about his optic nerve colobomas and his possible visual field deficits when she corrected us and mentioned about the retinal colobomas. I instantly welled up. I know it doesn’t change a thing, he is who he was before this appointment. Mind you the one on the right is minuscule but I don’t remember how the left one was described but if it was anything like his optic nerve coloboma on the left it’s…


    Busy but not

    I know I’ve been slacking, well slacking in my blogosphere. I’ve been trying to write things but the words just aren’t flowing. I keep working on it but it’s just not there right now. But really, we had this month without one trip to the Children’s Hospital! So I’ve been enjoying this and loving every minute at HOME. February is going to be really busy month though but then we are going to take our first family vacation in almost exactly 2 years!! But I just wanted to pop in and say I’m here and I’ve been trying to write, just things aren’t coming out right. But, I came across…

  • 2013


    11. The number of CHARGE babies and children that have gained their angel wings since we have brought Noah home. My heart is broken. 11 too many.


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