AJ's Coloboma: Partial or Blind

AJ's Coloboma: Partial or Blind

The concerns about AJ's vision first became a topic when he was in Edwards NICU. It's a routine test for babies that have other abnormalities, such as AJ did. He first had a procedure done on his vision with Dr. Ahmad that required anesthesia. The results were pretty straightforward. AJ had coloboma. The wavering part was determining how much he could see and if it would improve with age.

Coloboma is described as a hole in the eye that affects tissue development. Either the iris, retina, choroid, or optic disc can be affected. AJ had the most mesmerizing eyes as a newborn, but also kind of spooky. They were a beautiful light gray, but his iris (pupil) was pitch black and slanted like a cat. It also appeared to leak into the white part of the eye. Like a spilled coffee, leaking over marble countertops. I was told that babies with genetic disorders typically have various eye and vision problems, but like they said, I was hopeful with age it'd get better. Although, it actually got worse when AJ went to UIC.

It was the first time I'd attempted to go out and have fun when I got a call on August 3, 2023. I was with my best friend Jaz and we finally made our plans happen outside of text. We had just found parking Downtown for Ed Debevic's and my boobs were so full I started to squeeze them into a water bottle. I didn't bring my pump or bottles, because I didn't plan on being out past my next pumping time, but lactation had other plans. In the midst of hand expressing, my phone rang, and it was a specialist from UIC. I hated calls about AJ when I was out doing things to lift my spirit. Every. Single. Time. I was certain they'd tell me AJ had passed. Mom guilt 100% lives in my flesh.

Only that wasn't what the call was. I answered on speaker and the Doctor asked how I was and if it was a good time to talk. Reluctantly, I said it was. She goes on about how they had AJ go through a series of tests for his vision and unfortunately, he had failed. That a normal eye with vision would shine red when placed under a flashing camera and AJ's shines completely white, which is a clear indicator he has no vision at all. I cried on the phone and of course asked her what the cure is. "How can we get my baby to see?" Surely there is a cure for everything. But there was nothing, nothing could be done, and he'd have to follow up with an ophthalmologist regularly. We got off the phone and I called my husband to tell him the news and he consoled me while I cried some more. Jaz, sympathetic to what she just heard and witnessed, asked if I wanted to ditch Ed's and go elsewhere, but I refused. We'd already drove an hour from home, paid for parking and our reservation, and got cute. The least we could do was try to enjoy the rest of the night. Which we definitely did!

Ed Debevic's is a retro diner known for its snarky and sassy service. In other words, they disrespect you and customers love it. I could see how they stay in business. For some shitty service, the food is delicious. Classic burgers, fries, and shakes but the quality is unmatched.

For a long time, I blamed myself for everything AJ was going through. And if not me, I blamed my husband. We blamed each other. This was our doing, we'd always say. We did everything right by this baby, got married, both were working, merged our blended family, and still everything that could go wrong HAS gone wrong. By this time, I was deep in depression. Deep in self-pity and things just kept pilling on and it became too heavy to hold up so I caved. No, actually I sunk. My baby can't see me? He's never seen me? My own son doesn't even know his own mother. Worst off, he doesn't even know how handsome he is.

When AJ was home, we followed up with Dr. Davis (she is listed under my resource page) and things started to look up. In the beginning she too believed AJ had no vision. She followed AJ throughout his entire NICU stay while he was at Edwards, so she knew his history very well. She had a right to believe that he could not see, it was what the tests confirmed. Only, I did not believe it. So, I started to work on motor skills at home and every day we were stimulating his vision and other senses. I'd place his hand on my face and drag it across, let him listen to music and watch his body language shift with the beat, sit him in a Bumbo or lay him on a playmat to watch him reach for toys, and every single one of MY tests he passed. The kid can see, he's clearly faking it. The next time we went back to see Dr. Davis, his vision had gone from pitch white to dusty orange when viewing his eyes on an angle with her tool. She stated that he seemed to look down or up to stimulate the part of his eyes that seemed to have some sight. All I could do was smile and laugh.

She wanted to see if glasses would help strengthen the part of his vision where he could see and wrote a prescription. He looks adorable with them on and since wearing them I can tell he really tries to focus in on flashing lights that are close to his face. AJ's left eye is now hazel brown, while the right is a dark gray with hints of hazel. Both pupils no longer appear to leak and have rounded out.

His advocate. Forever, AJ's advocate. I am all of my kids advocate. This baby has been beating the odds against life itself, no one can tell me what he can or cannot do. He is a miracle, my miracle. I'll never understand why he was placed our lives or why he was chosen to be different from the rest of our children, but I do know he is worth every ounce of strength and courage that I have. I imagine what life is like for him and how confusing it all must be. He's just a baby and has been through more than I have in my 28 years of life. The least I can do is try and speak up on his behalf.