Lights and Shadows

Yesterday Benjamin had his follow-up with the eye surgeon and we were not surprised by the news. The blood has finally cleared up in the right eye, but unfortunately the situation there is similar to his left eye – the retinas are folded. What does this mean? Since the retinas are still stiff and are not unfolding, Ben will have extremely impaired vision – as in almost no vision. We suspect he can see very bright lights, as he reacts sometimes to the sun and lights shined directly into his eyes, but he probably can’t see much past lights and shadows. The surgeon said there isn’t anything more that can be done at this time. But he hopes that over time (as in a year or more) his retinas will become softer and then he can attempt to re-attach them. We have another appointment in 2 months and at that point we will see where we are. We will probably also consider a second opinion to fully explore our options, but Dr Lopez is _the_ guy for this sort of thing.

The funny thing is – Amy and I left the appointment not too shaken up about it. We had already come to terms with this and expected to hear the news. We are ok with it.

You may say “With technology always changing you shouldn’t give up hope.” The thing is, we aren’t going to place our hopes in some future technology – otherwise I’d be researching longer pants for when technology can make me 6 foot tall. Ben is what Ben is – and we’re going to make the most of what that means.

It will be different – yeah. But it’s not like we have ever raised a kid before anyway. As I told a doctor today when he told us to let him know if we noticed anything unusual – “We’re first-time parents – it’s all unusual to us.”

We’ll figure it all out, and Ben is going to be great.

Also, on a related note, Amy and I recently watched a trailer for an upcoming documentary on blind teenagers that really moved us. I shared it on Facebook, but I also want to share it here.

The film seems to be a labor of love – you can find out more about it here: http://www.doyoudreamincolor.org/

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10 thoughts on “Lights and Shadows

  1. I am so filled with admiration & so proud of you guys (hey & I haven’t even met you) your right “so What” He is Ben” like you said you have never raised a child before & Ben is going to be Ben & that will amaze you & blow your mind every step of the way, any one ever heard of Stevie Wonder? was that a problem I don’t think so.

    What will be will be and we will always wish the best for Ben but in your eyes as his parents he will always be the best.

    Angie x

    • Thank you so much Angie – your support means a lot. (And I think we all did meet at an Align picnic one year… Amy was there too, but it was before we were married – but that was a long time ago 🙂 )

  2. Ben is Ben, a beatiful little boy. My life is not like yours and Ben’s life will not be like yours it will be Ben’s life with problems just like yours and mine but different. You both have a great outlook and love conquers all. All our love to you. The Kaiser Family.

  3. If he can register light and shadow, I bet he will love those super bright breezy days when the sun and wind make tree shadows dance and chase. We are so happy that you are finally home and getting to be ‘real’ parents. Not that you weren’t real parents before, but now you get to do all the normal, boring stuff that actually turns out to be most special!

  4. Benjamin is one lucky little boy to have you both as his parents. My heart is full of love for all of you.

  5. brett made me read this out loud so he could be updated, which is also a sure way to bring on the waterworks but then I really could not stop laughing LOUD at the longer pants comment. we are glad that he can see light and shadows.

  6. Ben is BLESSED to have you as parents!!!!

  7. Hi Amy and Joe………I have been out of town recently and have not been able to follow the blog. I saw the pictures you sent to our NICU and WOW Ben is a real trooper and so are you both. I am so proud of all of you as you journey on with Benjamin. I have to agree with the above post……to have parents such as you to give him such wonderful care! My love to all of you and give Ben a kiss for me:)

  8. Ben can still have more vision than we can ever imagine. Eyes alone do not see. As Ben grows he will use his cognitive skills to make sense of whatever vision he has. How do I know this? My daughter too has folds in both eyes but she sees plenty which our eye doc cannot explain.

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