Your Baby Will See; How We Found UFA...
"Your baby will see."
As long as I live, I will never forget those words or the tone they were spoken in. Our third son, Colton, was five days old and had just been examined by a Pediatric Ophthalmologist following our routine pediatrician’s visit. Our pediatrician didn’t like something he saw during the checkup and in the most gentle manner I can think of, referred us to his friend – the Pediatric Ophthalmologist at our Children’s Hospital. I was still blissfully naïve following the referral and sitting in the exam chair thinking that perhaps Colton had a reaction to the ointment put in a baby’s eyes following birth. My husband, Adam, wasn’t as naïve but still unprepared for what would follow.
“Your baby will see,” he said in a tone that was so gentle and reassuring that it confused me. My first thought was ‘of course my baby will see – was there ever any question? Why wouldn’t he see?’ What followed next was the diagnosis: aniridia. And the implications: Colton will be visually impaired.
There are certain moments in your life that are defining in that they change you and how you view the world. This was one. We entered a different, scary, uncertain, but, make no mistake, equally wonderful world. Visually impaired. What did that even mean? Blind. That word scared me; it still does. Visually impaired - I could deal with this right now (although I still didn't know what that meant). Blind – for some reason, I couldn’t even say the word back then.
We spent the next two years solely focusing on Colton. We learned that everyone’s vision develops as they grow in the first few years of life. I needed to be certain that we did everything we could to make sure Colton’s functional vision was the best that it could be. It wasn’t until Colton was almost two that I was ready to dive into the details of aniridia and what it would mean to Colton as he got older. Thankfully, Colton was not born with any of the other vision-threatening complications (glaucoma, cataracts, the list goes on…) but he is monitored regularly. What I learned after ‘diving in’ scared me again. It’s one thing to be born blind, quite another to have your vision erode (when it wasn’t that great to begin with) and to endure painful treatment after painful treatment. This was my call to action. I needed to reach out beyond Colton. And when I did reach out – I found the most amazing group of people! We found people just like Adam and me – parents who wanted a better future for their children with aniridia. We found adults who had aniridia and inspired us simply because they were leading very normal, productive lives. We all had two very important things in common: aniridia and the desire to do something about it. We named our group ‘United Families of Aniridia’. Vision for Tomorrow welcomed us with open arms. We set goals for ourselves and went about doing. What an empowering feeling!
“Your baby will see.” Yes. My baby does see – maybe not like me and you - but he sees. And if we have anything to do about it, he will not only continue to see but see better!
Helen Mopsick (Mother to Jackson, Trent, and Colton - who happens to have aniridia)