One in a Million!

Written by Kelly Roberts

It’s generally spoken as a compliment, right? You are one in a million! Unique! Amazing! Brilliant! Outstanding! So good.

When one in a million is being spoken to about your child’s diagnosis, it loses the compliment. Instead, it creates fear, uncertainty, confusion and often, isolation.

In the beginning, what we were dealing with was difficult to even wrap our heads around. Ryan’s diagnosis was layered over the course of a year. His initial diagnosis at birth was Peter’s Anomaly, which affects about 1 in every million people. Once we conquered the eye part, which is the Peter’s Anomaly - eye & cornea abnormality, we spent a year with more tumultuous diagnoses and landed on Peter’s Plus Syndrome just after his first birthday. This syndrome diagnosis changed things again - it’s incidence is technically unknown. As of 2021, less than 80 people with this condition have been reported world wide. (NIH National Library of Medicine)

As a part of his syndrome, he is both deaf and blind (in one eye) with a host of other medical issues. This made it very difficult to know where to go for support or who could possibly understand us. When you are one in a million, no community seems to fit. We checked out a school for the deaf and they were not prepared for a child like Ryan. After that brief conversation, I was reeling. Wondering if he would fit in anywhere. Ever?! It did not seem like it.

For a few years, as more and more medical problems happened, the comment most often heard about Ryan’s syndrome from doctors was, “That’s a new one for me. I’ve never heard of it.” At the time it made me so frustrated. I remember complaining to my family that the doctors could seriously take 5 minutes to look it up in their medical references before walking in the door... but they never did. Now, though, I understand. Every person presents differently, especially when dealing with wide ranging symptoms in a wildly unknown diagnosis. There are no exact blueprints of what to expect, so it was far more beneficial for them to ask us, the experts on our child. But it was still annoying.

As the years have worn on, I became more used to Ryan’s uniqueness compared to the “average” kid but still frustrated that he didn’t really fit in anywhere. Not in public schools, not in private schools, not in the medical community. How many times have I wished away his “one in a million-ness”... countless, probably.

With perspective, that usually comes right after that moment of self-pity and wishing things could be different, I am reminded how many gifts his unique diagnosis has given me. Number one being: him! The fact that he has survived so many traumas, starting with his birth, is remarkable. What an amazing human being he is! Wicked smart, funny, persistent, lovable. Secondly, I am a far better person, teacher, and human than I ever was before him. I have more empathy, more generosity, more kindness, more understanding, more patience for others than I did before him.

He has taught me the importance of looking beyond appearance and expectations and to really see a person's heart. A person’s soul. To see their needs and wants.... And their uniqueness.

The actual number of lessons I’ve learned from Ryan? Easily a million and one.

Kelly Roberts is a mom of 3, former elementary teacher, freelance writer, advocate for kids with disabilities. She is currently serving as a WABT Support Group Facilitator for Shawnee, Kansas, alongside Kacy Seitz.