I was recently asked by another mom raising a child with a visual impairment about when we were first given our son’s diagnosis. She was interested in what it was like for us in the beginning. Because this is Eddie’s birthday month, and I’m feeling nostalgic, I feel like a short summary is in order. As with all parents raising special needs kids, our story is unique, but I’m sure will sound oddly familiar…
When Eddie was born, he was over a week past his due-date, and weighed in at almost ten pounds. At first, things seemed mostly normal, but within hours he developed some medical complications that required us to be transferred by ambulance to the nearest NICU (neonatal intensive care unit). We stayed there for almost three weeks. This original medical struggle had to do with his liver, and its lack of function.
Every possible test that could be run on Eddie’s liver was completed. He was required to donate a few drops of blood at least twice a day for labs. With every test, we were given no answer. On the day of his scheduled liver biopsy, Eddie’s liver just simply “kicked-in.” A reason for his liver delay was never given, or explained. That same day, we were released to go home.
We spent the next few months caring for Eddie like a typical newborn. We saw no reason to be concerned, and thought the worst behind us. Even though I learned later that a few friends questioned his vision during that time, it didn’t worry us once. Even though we had an 18-month-old as well, we never noticed a problem. Never knowing anyone who was blind, I really couldn’t comprehend the idea of a baby being without sight. It wasn’t anywhere on my radar.
At Eddie’s four-month well baby appointment, his doctor noticed a problem with his eyes. He wanted us to see an ophthalmologist the very next day. His urgency worried me, but he quickly explained that vision delays can be caused for a number of reasons and that I shouldn’t be concerned. I left there really not feeling too alarmed. The doctor didn’t look “freaked out,” so I didn’t feel it.
The next day, Eddie visited his very first ophthalmologist. After dilating Eddie’s eyes, it was immediately clear that his optic nerves were barely there. The doctor told me he had Optic Nerve Hypoplasia in pure medical jargon, which I didn’t comprehend. Then, he looked me in the eyes and said, “Your child is blind. Do you understand that your child will be severely disabled?” Um…what?!? I guarantee that I didn’t understand anything, and thank you for putting it so nicely.
When asking for answers, and what to do next, I was given a phone number. That phone number was for adult rehabilitation services for the blind. Luckily, they weren’t as misinformed as the doctor, and they quickly connected me to our state school for the blind. After calling them, my contact information was given to the best teacher of the visually impaired I have ever met. She came to meet me within days, and our journey began.
After leaving the eye doctor, I remember heading straight home. My husband came home from work, so that we could discuss what I had learned, and what this might mean for Eddie. I remember crying very little, and Eddie’s dad didn’t cry at all. I’m not sure if that was due to our normally optimistic traits, or if it was due to sheer ignorance about having a child with any kind of special needs. Really, I don’t think we had a grasp on what this meant for Eddie’s future, or our own. Even now, after almost eight years, I’m still struggling to grasp it all.
Later, I remember talking to family and friends, and feeling almost outside of myself. Through tears, I told my closest friend that I was worried he would never see my face…never make eye contact. My mother-in-law tried to comfort me by stating that she’d be here for us. Instead of graciously accepting, I barked that in the end we would be the ones primarily responsible for Eddie, and from that I felt there would be no relief. My immediate shock of his diagnosis was met with mood swings, sadness, and more than anything else…questions.
What was his diagnosis? What caused it? Were there other complications expected? What other specialists did we need to see? Would he go to a school for the blind someday? How does somebody learn braille? Would he need a cane, or a guide dog? Would he ever have a job? Would he ever be married? How do we take care of him? What do we do…what do we do…and what do we do?
I’m still asking questions. I still find myself regressing to mood swings, and even sadness at times. However, I’m also finding some answers. With each answer, I find joy, accomplishment, and happiness for Eddie…and for his family. This child has completely changed my life. Because of him I have changed my career, reprioritized my life, and have been given an education only he could provide.
So, looking back eight years ago, and to the day I heard that my child was blind, I can’t say that I feel sad. Instead, I feel really blessed…truly. Finding that inner peace may be the best thing that could have ever happened for me, or for Eddie. I know it can be hard to relinquish, but I realize that continuing to question the past simply won’t help anyone in our family, Eddie included. We need to focus on how we can help him today, and tomorrow, and next year, and in ten years. Those are the days we have to look forward to, and that we need to embrace.