I have a realization that might help parents who are extremely worried about their children with nystagmus feel better. This article will share with you how not to worry about your child's eye condition.
When my son was first diagnosed with CN at around 2 months old (now 8.5 months old), I was a wreck for the next three months. My back hurt, I was stressed, and didn't sleep well. I researched all I could, spoke to as many parents I could, and worried between each doctor's visit, praying the next one would have some better news.
As time went on, what I realized was that things get better simply due to the law of percentages. Parents and doctors have said things get better over time, but I had to experience time for myself to know.
How Not To Worry About Your Child's Eye Condition Like Nystagmus
When your baby is first diagnosed with nystagmus or any ocular condition, s/he is probably not moving much, saying much, or doing much. As a result, the nystagmus is a much LARGER percentage of the baby. You therefore naturally fixate more on the nystagmus.
As months go by, the nystagmus becomes a SMALLER and SMALLER percentage of your little one because s/he eventually begins to sit up, crawl, grab, smile, pinch, giggle, etc. You start focusing on the new things, and sometimes, you might even forget your LO has nystagmus because s/he did something wonderful.
Nystagmus will probably always be a part of our lives, and that's OK. It's what makes our children unique. There will be ups and downs, but that is the same for every single parent and child. Acceptance is an integral part of moving forward. We will adapt!
Instead of worrying so much, let's enjoy our little ones as much as possible for they grow up so quickly. They will surprise us and amaze us with what they can do. I believe this with all my heart. And I also finally believe my 75 yo neuro-opthalmologist at UCSF who has been seeing nystagmus patients for 40+ years, that things really will get better over time. “The nystagmus will be the least of your worries once he's a teenager!”
Update March 2019: My baby boy is 23 months old now and although his nystagmus is still there, he has far surpassed my expectations for what he can do and see. What happens when you read all the online forums and FB group messages is that you start to imagine the worst because only parents with concerns tend to post and ask the most.
Our boy stood up at 10-11 months, walked with assistance from 11-14 months, and has been running around since. He recognizes all colors, alphabets, numbers, and is able to communicate in several languages. He's a joy and a determined handful. He has a slight head tilt right ear to right shoulder, but seems to see quite well across the house.
I'm looking forward to helping him develop for the next 16 years!
Update May 5, 2021: My son is now 4. Although I still worry after each eye appointment, I still strongly believe lots of good things are in store for my son. He is gotten into a language immersion preschool. He's hitting all his milestones. And, we will provide the best accommodations for him. By the time he is 18, I'm sure he will be quite self-sufficient. He will be LOVED! And that's the most important thing.
My son gives me the motivation to keep working hard every day. I am building a rental property portfolio and maintaining our online business as career insurance for him. I will do everything in my power to give him the opportunity to live a happy and fulfilling life.
All the best!
About the Author: Sam began investing his own money ever since he opened an online brokerage account in 1995. Sam loved investing so much that he decided to make a career out of investing by spending the next 13 years after college working at two of the leading financial service firms in the world. During this time, Sam received his MBA from UC Berkeley with a focus on finance and real estate. He also became Series 7 and Series 63 registered. In 2012, Sam was able to retire at the age of 34 largely due to his investments that now generate roughly $200,000 a year in passive income. He spends time playing tennis, hanging out with family, taking care of his son, consulting for leading fintech companies and writing online to help others achieve financial freedom.
FinancialSamurai.com was started in 2009 and is one of the most trusted personal finance sites today with over 1 million organic pageviews a month. Financial Samurai has been featured in top publications such as the LA Times, The Chicago Tribune, Bloomberg and The Wall Street Journal.