Darrow’s ONH Diagnosis

When Darrow was a brand new baby his eyes constantly went back and forth and being the brand new parents we thought, “Look at our boy! He’s so observant! He’s just looking all over!” Luckily my Mom is observant and helped us realize that baby’s eyes aren’t supposed to do that.

So we brought the Nystagmus up to the doctor and they scheduled MRI’s to see what was going on (all of this on top of huge eating problems where he lost a lot of weight). After a few months he had the MRI’s done and we learned that his optic nerves are underdeveloped (called Optic Nerve Hypoplasia).

As the optic fibers grow and stretch through the “traffic jam” in his nerves, his eyesight will go up and down and shift until he quits growing. ONH comes with a lot of other possible attached issues that exhibit similar characteristics to OCD, Autism, and a whole list of other possibilities that range from mild to scary.

We’ve known about Darrow’s developmental delays from early on, as well as some of his OCD and Autistic-like characteristics. There are times I forget he has difficulties, and there are times they smack me in the face. At his latest checkup he couldn’t see the images on the vision chart at all, where Ione could call them all out.

There’s the part of my Momma heart that aches a little at the extra hardships ONH will cause for him in his life. but at the same time this little boy is absolutely amazing and I can’t imagine changing any bit of who he is and I know these challenges are his (and in a way ours) for a reason. So instead of working to “fix” him, we’re trying to learn how to help him live his best life, whatever that may be. And we don’t always do a good job of that, but day by day we’re learning and trying. And recording the awesome way his brain makes sense of the world.

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