Learning your child has a birth defect.....8 years later!

On July 2, Owen was diagnosed with something called optic nerve coloboma.....in both eyes. This means he has holes in his optic nerves to both eyes. 

He has been complaining for a LONG time about not feeling well, saying his eyes hurt, squinting and gets bad headaches often, which in turn lead to his stomach hurting and the cycle goes round and round.  He is our dramatic child so it's really hard to tell if he "really" feels all of those things or if it's just an easy way to get out of doing something.  I feel like he is behind in reading....but it has never been so far behind where I was overly concerned.....more frustrating because I felt like he should be further ahead than where he was at. 

Finally we decided to take him in to the doctors....after all he was complaining numerous times a day that his eyes were hurting and these headaches were just constant. I explained everything to the doctor and she referred him to an ophthalmologist who was able to see him the same day. She knew we were about to leave for vacation for two weeks, so I appreciated the peace of mind knowing he would get checked out and we would have answers the same day. 

Honestly, when we got there, I felt like it was just a waste of time.....he would be fine, nothing would be found and it was just another hour gone out of my day, which I was trying to pack for vacation and host a Fourth of July BBQ the same night. The doctor did his exam and then asked if I would come in the hallway to talk to him.  I was alone and had Owen and Wyatt with me so it was really a blur when I heard him say that Owen had a birth defect called coloboma. Optic nerve specifically and it affected both eyes. There is no treatment and it can lead to retinal detachment and instant blindness if not caught in enough time.  He gave me his business card and told me to call if Owen was ever having any serious issues and to get him to the emergency room right away. 

We left, me in awe.....not wanting to tell him anything was wrong, but he knew better. I wanted to cry the whole way home and just crawl in bed and be with my boy but I knew I needed to be strong. 

My closest friend lost her five year old to brain cancer and I kept thinking to myself how selfish I was being about this. Owen is still here, living a great life, thankfully, and what I needed to worry about were simply that, worries! Maybe someday something will happen, God willing everything will continue to be fine for him other than a few minor hiccups along the way. 

We've seen his pediatrician since who has referred us to a geneticist and has started him on a medication nightly for his headaches. Knock on wood he hasn't been complaining that much about his eyes hurting or headaches so hopefully the medication is working. 

So now we start the long road of what ifs. What if something happens at school and he gets injured or starts complaining of weird vision loss. I have to notify his teacher and put that in his file so they are aware of the urgency. If he ever has any overnights with friends I have to say something. I don't want to put it in front of everyone's face all the time but it's important people are informed. 

Here is a tidbit of info on what he has. It's a very rare birth defect so there really isn't much information. The eye doctor was surprised he hasn't had any vision issues until now and it took 8 years to detect. 

My boy.....I love him so much. Kris always tells me he is exactly like me. 

Loves keeping active

Now I love that he reads because I realize that he may have never had the opportunity or may not in the future be able to. Even if he's a bit slow....I love it!

He also loves the piano. I took a video and sent it to my sister in law and she responded and said he was like a little prodigy. Who knows what his future will hold.

I love his smile and his adventurous side. 

And he's a giant goofball at times. 

He's a big time mommas boy.....

Who loves sweets, sometimes a little too much!

He still cuddles me and is sad when I get hurt or don't feel well. 

And so stinking good looking!

We have so many good memories together. 

He is a skiing freak. Loves it!

And he loves working out. He can do crossfit just about anywhere. 

So excited about the simple things in life. 

We also got him several pair of sunglasses so that his eyes are always protected while in the sun as he complains that bright lights bother him. 

I'm sure there is still a lot to learn and we are eager to meet with the geneticist to find out if Owen may have any other issues that typically go hand in hand with having a coloboma, or if Wyatt needs to be tested as well. Prayerfully not and we can just keep our eyes on his eyes :)