My identical twin girls have been diagnosed with a very rare eye condition known as Nystagmus. Nystagmus is an involuntarily, repetitive movement of the eyes. Because their eyes are in constant motion, it is difficult for them to look me in the eyes, which can be a scary feeling as a mom. As soon as I tell people that my daughters have Nystagmus, the first question I get is, “So are there exercises you can do for them?” The answer is no, but for most of us, it is difficult to accept that there are things outside our control. We naturally want to be able to fix things or make them better.
Nystagmus can either be something they were born with or a result of a problem with the eye or brain. I have an MRI scheduled for Monday for one of my girls to find out if there may be a neurological explanation. Because they are identical, they decided only one of them needed the MRI, so I was forced to choose which of my two babies would have to go hungry and be sedated for this procedure. As I sit for two hours waiting for their results, I have no idea what I should even be praying for during this time. I’m assuming I don’t want it to be neurological, but I really have no idea if that could be good or bad. On the flip side, the less I know, the easier it is not to worry, because I’m not sure what I should be worried about.
But no matter what the cause or concerns that follow, I’m stuck with the reality that my girls still have Nystagmus, which will affect much more than just their vision. I met a woman whose brother has Nystagmus, and I still can’t shake how sorry she felt for me and my girls. She shared that her brother was picked on, struggled with self-confidence, never got married, and now works for their dad. What struck me most was how often she kept repeating, “but he is/was really smart.” She confirmed my fear that people will assume they are not as smart just because they are different.
While it’s easy for me to distract myself with different DIY projects and parenting tasks, this encounter forced me to acknowledge the reality that my girls may have a difficult road ahead. Up to this point, I chose denial, masked as faith. Now, I’ve been confronted with the fact that they will likely get made fun of in school and there is absolutely nothing I can do about it. I’ve already had two year olds come up to me and ask why their eyes keep moving up and down. Even though others may be too afraid to ask, they may still see them as different, not normal, disabled. I think I wanted to believe that people somehow didn’t notice.
Not only will other people see them as different, but my girls will see and experience the world around them in a different way as well. While that sounds disappointing to me right now, I pray that, like my girls, my eyes would be be opened to seeing life’s circumstances in a way others cannot. I want to be able to see through people’s differences to the beauty inside. Whatever my girls lack in sight, I pray they will flourish in kindness, character, and strength.
Whenever I used to hear people say that one day in heaven the lame will walk and the blind will see, I assumed that was an acknowledgement that our disabilities and shortcomings must not be how things were intended to be. I now see that it doesn’t have to be one or the other. While my hope is that their vision may one day be corrected, I have a newfound conviction that, whether healed or not, their eyes were created different by design. It was not a mistake. It was part of a plan. May this experience continue to free me from any obstacles that prevent me from having the eyes and heart of God.
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