What ROP means for Dawson

This is a nugget of information I took from Ropard.org. It was written by Camille (via her mama), a now-6 year old overcoming severe ROP and Glaucoma. I have just speaking with her mom, Jen and am excited at what an amazing resource she has become already, and shes nice to boot. I have modified it to apply to Dawson since he is quite a bit younger than she is. But the similarites are AMAZING.

What can I see and how is my vision different from everyone else’s?

This is the question that drives my parents nuts (well this among many =), and they won’t know for sure what I can see until I can tell them! Cover a cardboard toilet paper tube with Saran Wrap and smear that with Vaseline and look through it while covering your left eye. Thats the best way we can describe it.
They can make some pretty good guesses, though:

I can see enough, I know when someone/something is in front of me. I know that my Momma and Daddy look like.

Because I bring objects up close to my face, my best detail vision is probably up close. Please don’t discourage this, even if it is the (in the future) TV. It is how I adapt.

I may tilt my head differently to look at things, and this is okay. It is how I make up for patches or blind spots in my vision.

My vision may fluctuate throughout the day, and may get worse with fatigue.

It takes longer for me to adapt to changes in lighting than most people, and I may sometimes be more sensitive to bright lights.

When I am looking at you, it looks like I am looking off to the side, or sometimes my vision will wander. I am adapting to make the most of my vision.

I seem to be able to see large objects at somewhat of a distance and smaller objects within about three to six feet. It’s hard to tell if I see things, or if I just have a good memory about where things are.

I love to look at pictures in books, but it is best if they are bright and simple; visual clutter is often hard for my eyes to sort out.

I can see your facial expressions if I am within about 1-2 feet of your face.


Will I ever be able to get more of my vision back?


{Camille} We don’t know. My doctor’s team in Detroit {Ha! That is Beaumont! We are so lucky to have them so close to us. Miss Camille has to travel over 15 hours to see the same Retinal team we do} is working hard on research to grow new retinas and also on research to implant chips into the retina to allow vision.

Even if these things don’t work out, I can live a fulfilling and successful life. There are many things to help me be independent, and I have a ton of potential. My family, my friends, and you can help me to realize that.

{Adding for Dawson} While I can still see objects, I explore most things by touch taste and sound. Thats okay. Let me do it. But, I may be overwhelmed when I am exposed to a lot of sound, speech or new things all at once. It does not mean I am a fussy baby, it means I am over-stimulated. Give me a few minutes to nap or regroup and I can be as good as new.

I get scared easy. I cannot see things coming or know where everyone/everything is. It is easy for things to sneak up on me. Please talk me through any changes or new things as I grow.

Most of all, be patient with me, and with my mama. =)
{Sara} Sometimes I dont always like to talk about what is going on with Dawson. It is how I am coping for now. He is such a special little boy and is growing so fast, that sometimes we pretend everything is just as fine as I say it is. Because to us, it is. We do not know any different other than the hand we have been dealt and we are soo soo lucky to have the medical team that we do have, right here in our home state. Sometimes I get sad about some of the obstacles I know Dawson has ahead of him. (Will he drive, will he date, marry, work? etc etc) but for the most part, we are all trying to understand.

Because of these simialarities, I have gotten a lot of information in a very short period of time that will help me understand what to expect as Dawson grows. I am so very thankful for that, even though I know it may change or just be different.