During our pregnancy, Eleanor was diagnosed with a neurological condition called Dandy-Walker. You can read about that here: In The Beginning
I know this may come as a surprise to you, but you should just … forget about all of that. Yep, all of it. That initial incorrect diagnosis that lead to a distraught mother (and father)-to-be for 14 weeks has nothing to do with where we are today.
Nope. Nothing at all. Nada.
At least that’s what they tell us. DW was ruled out when Ellie was 4 months old when we had an MRI and the pediatric neurologist said that if it were possible to see the brain better with an ultrasound, they wouldn’t have seen what they thought they saw. He told us her brain was “normal,” although she did still have a slightly enlarged fluid space. What that means is still entirely a mystery to us, but for now there’s something more pressing.
Unfortunately, we could only be excited about this news for a very brief moment. Because, then, all that we could think was “Well then, what is going on!?” She’s had nystagmus (a pendulum-like roving of the eyes) since she was born. Her eyes never fixated on anything. We thought it had to do with Dandy-Walker, since there might be motor function delay issues, including that of the eyes. We thought we were waiting to see if she would have other motor delays. We thought we were onto something. We thought we had a safe place in which to put ourselves. To categorize. To understand. But, no. And again, Brian and I were both lost.
To further, I was angry, confused, and felt like giving up. I didn’t want to see anymore doctors. I didn’t want someone else telling me what was “wrong” with my baby. I felt like all the distress, fears, stress, and doctors appointments had ripped my pregnancy joy away from me. I just wanted to be with Eleanor. I wanted to finally have all those wonderful mommy and daughter moments. I wanted to play with her, talk with her, read with her, sing with her. I wanted her to look at me.
Why isn’t she looking at me?
When Eleanor was four months old, we took her to her first ophthalmologist. “She has Nystagmus,” he told us. “She isn’t visually responsive. My guess is that she will probably be able to perceive light and where it is coming from, and possibly where larger objects are located, but that’s about it.”
Brian and I were taken aback and extremely confused. My mind flashed with brief memories of seeing other babies her age engaged in direct eye contact. Eleanor had never seemed to see me. To look at me. We never had that breastfeeding moment of baby in mother’s arms hypnotically gazing at one another in complete and perfect love. But I had just ignored it. Her eyes would adjust … she could see, I told myself.
But that moment in the doctor’s office confirmed it. She couldn’t see like we see. The doctor left for a moment to grab some paperwork and there we were, the three of us, in complete silence. The only thing I remember hearing or feeling was my heart now all the way in my head, pounding in my ears.
The ophthalmologist walked back in and handed us a brochure for Delta Gamma Center for Children with Visual Impairments. He confidently told us that contacting this organization was our next best step.
I still remember the first day we had a visit from someone with Delta Gamma, when Jo, Eleanor’s teacher of visual impairments stopped by to perform Eleanor‘s first assessment. She walked in with a box full of toys of all shape, color, texture, tones, contrast, glimmer, gleam, light-up capabilities, etc. etc. She shut all our blinds and curtains, turned our baby away from any leaking light, got out a flashlight and a huge shiny Christmas ornament and held both up in front of Eleanor creating a disco display of light and color on our living room floor. And we thought, who IS this crazy woman!?
While Eleanor sat in her bouncy seat, Jo sat right in front of Eleanor watching her extremely closely. Jo studied her for a long while, holding different things up for her to see, while moving them around from side-to-side and up-and-down. Watching Jo, I immediately appreciated how methodical, intuitive, and focused she was in discovering what she could about Eleanor. Her procedure was so full of thought and attention; more than I had ever seen of any medical doctor. After trying a number of different items, Jo held up a little light-up spider in front of Eleanor, and that was when we saw it. Eleanor reached out to touch it.
As tears filled my eyes, Jo turned to us with a smile beaming on her face. “She saw it.” She said. It was the first time that we had ever seen Eleanor respond to anything visually. I was overwhelmed with joy, but also filled with curiosity. What else could Jo tell us and show us?
At the end of our first day, I motioned toward Jo’s silver Braille necklace and asked, “What does that say?” “Hope.” She smiled. It couldn’t have been more fitting — in that moment, WE had hope. We knew we weren’t alone. We knew we were in good hands.
Read about Eleanor’s eye condition, HERE.