Our story began on Tuesday, August 25, 2009 at 1:35 in the morning. Shortly before Adele's birth, my mother, husband and I joked with our nurse about vasectomies and children, completely unaware of what lay ahead. Following a much loved epidural and two short pushes, Adele came into this world.
Immediately following her delivery, I was worried about what I worry about at each of my children's births - their color. I asked the nurse if she was breathing well, and she was, as exampled by some nice crying. As the nurse took Adele to her warmer to wipe her off and take measurements, I realized that she had a look of concern on her face. She wiped her face again and again, and then I realized what she was looking for - her eyes.
I'll never forget the look on the nurse's face, or my mother's. As I scanned their faces, I heard the words, "Does she have eyes?" leave my mouth. The response from our nurse that followed, "I'm not sure" made that sick tinkling feeling of fear wash over me. I knew at that moment that our baby was blind.
The next few moments seemed very distant to me, like I was watching from the doorway. I knew I was sobbing, that my husband was saying something to me, that my mother was in shock, that the doctor was speechless, that our daughter was blind. Our beautiful baby girl was blind. She was born without either eye. She would never see me, her daddy, her brothers, her children, the sunset, color...so many things. At the same moment I experienced intense grief about Adele's blindness, and extreme happiness for her health and presence - it was emotionally and physically overwhelming. It wasn't until Adele was laid on my chest that I was able to recognize the reality of what had happened - our daughter had been born.
The next several days were very emotionally challenging for me. I was heartbroken, and angry, and overjoyed, and angry. Why did this happen to my child? How could something like this happen to an innocent baby? Why her?
As a parent, you want better for your children than what you had or experienced as a child, and Adele would be faced with challenges and difficulties that none of us could imagine, even myself. I was born without my right eye, upper palatal malformation, and an extra digit on each hand. I know the surgeries and discomfort that accompany orbital and maxillofacial reconstruction. I know the frustration of constantly thinking about my appearance to others, the pain of oversized prosthetics, the longing to be "normal" - things I would never wish my child to experience. And so, I grieved for Adele. I grieved for the daughter that I had hoped to have and lost. For the pain she would have to endure, and the lifetime of challenges that would fill her future. I raged at the fates for doing this to our beautiful daughter, and then realized that perhaps it was meant to be.
I was told as a child that my malformations were caused by a random genetic defect, and that there was no reason to believe that it was an inherited genetic abnormality. Following the birth of our first son, who is "normal," I believed that what I had heard about my defects were true: it wasn't "passed down." Relieved at this, my husband and I proceeded to have two more children, both boys, both "normal."
So, at the pending birth of our daughter, and with two routine ultrasounds under our belt, we were unsuspecting of the shock of having a child with bilateral anophthalmia. It is apparent, and will eventually be confirmed I'm sure, by a geneticist, that my malformation is a sex-linked inheritable defect. Who knew? Not indicated by ultrasound or any other routine blood test, or the three children we'd had prior to Adele, her anophthalmia hit us blind sided.
In a way, we are grateful Adele came when she did. Had she been our first, we could not have imagined taking the risk of potentially having another child afflicted with blindness and would not have proceeded to have any other children. Now, Adele has three older brothers who will enrich her sensory input as only three feisty older brothers can.
So, Adele is here, healthy and growing like a weed. We've all cherished the special moments of bonding that we've had with her, and look forward to each day we spend together as a family. Soon, the endless visits to numerous doctors begin, as well as the journey we will take as a family adapting to the world of blindness. We know that together we will provide an enriching and loving environment for Adele, and that we will all grow in ways we cannot imagine. We are so very thankful for our precious little girl, and for the wonderful thoughts and wishes from everyone.
