This year the Foundation Fighting Blindness Vision Walk was again virtually. I decided it was time to share Avery’s story with some of the other neighborhood moms. The support was amazing…having received support from all, from joining us in the walk, to donating generously, to joining us in an evening “afterparty”.
When I told Avery I had shared her story, she naturally asked to read it. While I knew she needed to read it, I was a little concerned about her knowing how I felt early on. I shouldn’t have been. Avery slowly and carefully read her story and when she was done, she looked up at me and said so graciously and matter of factly, “Mom, I love my story.” It was so heartwarming. Later in the evening, I asked her what she meant by that. She said not only did she love what I wrote, but she truly loved her story because it was her life. Its been a few weeks since that moment and I think of it often.
Below is Avery’s story:
Avery was born alongside Emerson at 37 weeks, both weighing a healthy 6 pounds 7 oz. Avery rarely opened her eyes her first three weeks and when she finally did, we noticed spots. Several doctor visits later, she was diagnosed with congenital cataracts. Avery had surgery at 5 and 7 weeks old to remove the cataracts, one eye at a time. Surgery went well; we began daily eye patching and she began wearing specialized contacts made for kids without a lens. When Avery turned three months, she started rolling her eyes. I remember it vividly thinking what in the heck is she doing, not realizing at the time that she had no control over it. Back to the ophthalmologist we went and after seeing a specialist, Avery was diagnosed with nystagmus, an involuntary eye movement.
During the course of the next few years, we visited many specialists, traveling to various states to figure out the cause of Avery’s nystagmus because nystagmus is actually a symptom of many other underlying conditions. Avery was diagnosed with a number of other symptoms in addition to the cataracts and nystagmus to include microphthalmia (small eyes), small optic nerves, and low vision. She had bloodwork, genetic testing, and we seemed to be ruling out certain eye conditions, but not necessarily narrowing in on one.
Early on, Justin and I were an emotional roller coaster thinking our daughter could be blind and not knowing at the time what that meant or what her future would look like. While we continued to see specialists and search for answers, we became involved with the Foundation Fighting Blindness, not knowing what our little girl’s future held and wanting to do something. Our first Vison Walk was when Avery and Emerson were 9 months old. Justin and I did the 3-mile loop in Reston while pushing the double stroller.
Avery is now 9 and thriving. I wish I knew then what I knew now. Avery would have challenges just like every other kid, but she wouldn’t let her vision limit or define her. Avery dances, does gymnastics, rides bikes, played soccer, and even played softball for a season. She is smart, funny, always making new friends, and will talk your ear off given the chance.
We still have not been able to pinpoint an actual diagnosis; however, it isn’t something that pre-occupies us anymore. We continue to participate annually in the Foundation Fighting Blindness Vision Walk and to date we have done so fairly quietly.
Avery sees the world differently than most people. While that reality was initially devastating, it turned out to be a blessing. Avery taught me to see beauty where I didn’t know it even existed. She taught me to be more in tune with all my other senses…to appreciate the details, to feel, to truly smell the roses. Avery taught me to open my heart and my mind wider than I ever knew possible.
**Coincidentally a few days before the Vision Walk, Avery had her 6-month regular ophthalmologist visit and Dr. Seidman believes with a prescription change (increasing Avery’s bi-focal from a +2 to a +4 and decreasing her distance power from a +23 to a +21, Avery may be able to see even a few lines better than she is now, which by the way was 20/125 with both eyes! We are in the process of getting her new glasses now!
