“But mom, if they ask, I don’t know how to explain corneas and retinas and inflamation to my friends, I think it will be too hard. I’ll just say I have eye problems.”
And this is what I say as well.
When anybody asks.
As most of you know, for about a year now we’ve been struggling with eye issues with my kiddo. It’s been a frustrating battle. With very little answers. He’s been poked and prodded by who knows how many doctors and student doctors just wanting to get a look at the strangeness of his eyes. Too many to count. Up until recently only one part of the eye has been affected.. the cornea.
I won’t get into too much detail, but about a month and a half ago we ended up in emergent retinal apppointments before boarding a plane to Alaska. He was dialated the entire trip, and was on eye drops every hour. Took it like a champ. Two hours after we landed back in the mainland we were back in the office learning of another specialist in Denver.
This specialist ordered blood tests. Blood tests for everything and all kinds of genetic tests.
Now, I’ve handled the eye stuff pretty well up until this point. But it is a surreal moment sitting in a Doctor’s office talking about where else in his body this could be stemming from, and “we just want to make sure” statements are being made….it’s like being in a movie. A sappy lifetime movie. Only it’s my real life. This is really happening.
So I cried. A lot. And I avoided people. A lot. I hugged my kid. A LOT.
Waiting for answers, especially ones like these…..probably one of hardest things I’ve done. So far.
Today the results were back.
NO HUGE problems or anything stemming from anywhere else. Basically, he has an autoimmune disorder localized in his eyes. We will be going on medication for the next two years and having to have blood tests every few weeks.
God is good.
Thank you to all who have been thinking of us, praying for us, and just been there for us. We are blessed.
Great news!! You have the strongest little man! 🙂
So glad to hear the news. I know this has been an incredible test for your family. Just know you are in the thoughts and prayers of so many of us out there!
Thank you guys. We know that we have so much love out there, and are so grateful. It is nice to at least have an answer about one area of his eyes. There are still so many mysteries and we have a long road, but it was a good day!!
T-Rex sized hugs and prayers pointed in your direction daily!!! You’re a great mom, Stacey!