I have been anxiously waiting for this day for the last three weeks. We noticed Arlo’s eyes were making some unusual movements and he was having a hard time focusing on us sometimes, right around 8 weeks of age. When I brought it up at his two month check-in his pediatrician, she recommended we make an appointment to have him seen by a specialist to determine if he might have a condition called Nystagmus. The condition is fairly rare and most of my google searches left me more scared than comforted. The hardest part to swallow was that there are no treatments or therapies to fix or improve Nystagmus and it’s not something he could outgrow. People with the condition can have widely varied experiences – some people have only slight vision impairments, others have significant ones.
I’ve watched him very closely since that initial conversation with his pediatrician and in my heart, I knew he had it. I’d watched youtube videos of people with the condition and while Arlo’s wasn’t as pronounced as most of the people in the videos, his eyes moved in a similar fashion. It initally felt like a huge punch in my gut. I was sick about it. Here was my happy, amazing, perfect little boy with a possible condition that could seriously effect his ability to see. Would he be able to play sports? To drive a car? To function in day to day life without vision aids? It took a few days, but I came to terms with any of these possibilities pretty quickly. Whatever the outcome, we would do whatever we could to help him and raise him so that he never saw his impairment as a setback.
So today, I could barely think of anything else but his appointment. I just wanted answers – to know what we would be up against. The pediatric opthamologist confirmed almost immediately that he did have Nystagmus. Hearing those words leave his month stung for a second, but I already knew it to be true. Then he tried to explain to us what this meant for our son. Currently, he is too young to make a concrete diagnosis. The doctor is pretty confident that his Nystagmus is not the most serious variety and that most likely it will cause him some vision problems, but hopefully will not be a major hindrance to him. He will be evaluated again in 9 months and we’ll have a clearer idea at that time. He also said we will have to wait until Arlo is 3 or 4 years old before we will have a complete picture of how this Nystagmus is effecting him. He may have blind or fuzzy spots in his vision, possible color blindness, or other vision issues… or he could see 20/20. At this point it is just a waiting game.
At the end of the appointment we thanked the Opthamologist for his time and he said “He won’t be a fighter pilot or hit a 90 mile an hour fast ball, but I think he’s going to be just fine”. I thought nothing of that comment, but by the time we got outside, my husband Brent was choked up. It is the first time in the 7+ years we’ve been together that I’ve ever seen him cry. “I just don’t want anything to stop him” he said, “If he wants to fly planes or play baseball, I just want him to have the option to be able to do that.”
It’s hard to know that this will always be with him and that it will probably cause him problems at some point in his life. We all want the easiest, straightest path for our children, and knowing he’s going to have to deal with this hurts in the deepest parts of my heart. But this boy of ours has had a magical way about him since the minute he was born – a gentle spirit, an old soul – and I just know that he’s not going to let this hold him back. He may not be hitting fast balls, but he’s gonna knock this curve ball he’s been thrown out of the park. Just you wait and see.
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