Life and Sight
When I walked out of Children’s Hospital the day we turned off Lizzy’s life support machine, I said to my little sister, “I never want to see this place again.” Then Cecilia moved inside of me. I paused, then qualified my statement: “Unless, of course, Cecilia ever needed it.”
Two weeks ago, I found myself walking back into the doors and checking through security at Children’s Hospital. After a long string of pediatric ophthalmologists and neurologists, we had been referred to Children’s Hospital to do an ERG (electroretinography) on Cecilia’s eyes. After hours of screaming misery during which we had to restrain Cecilia from ripping the electrodes off of her eyes and ears, we were informed that Cecilia’s retina are not behaving normally, which typically indicates an underlying genetic condition. The conclusion of the head of ophthalmology was that he believes Cecilia’s vision is compromised by more than 50%.
Cecilia has been wearing glasses since four months of age to correct extreme farsightedness, but, in time, it became clear that the glasses were not making enough of a difference in her visual response to her environment. She is behind on gross motor milestones because she cannot properly see the physical stimuli that usually encourage babies to get up and move on their own. She has been enrolled with physical and vision therapists and developmental specialists and now, we are being referred to geneticists.
There are still many unknowns and unanswered questions. The only thing we know for sure is that Cecilia cannot see like other nine-month-olds. She is acutely sensitive to touch and sound cues and easily overwhelmed by environmental stimuli. In short, she needs a lot of time and a lot of attention.
This reality doesn’t matter to me. She is worth every second of time I have to give. There is nothing I would not do for either of my daughters. And yet, somewhere along the way, it was decided that the things they needed most from me would be the very things I could not give to them.
Losing a child puts you face to face with the irreversibility of death in a way that most other types of death do not. As a parent, it is your role to protect, save, and fix things for your child. As a parent, there is no greater loss and no greater failure than for your child to die. And trust me when I say that your inability to give your child back his or her life forces you to confront your mortality in a way that nothing else can.
After Lizzy died, the only thing that I could focus on was that no one could give her back to me anymore than I could give Lizzy her own life back. Humans, I concluded, were utterly powerless when it came to the most important things.
And now I find myself confronted with a similar reality. I can want with all the ferocity and frenzy of my heart for time and age to correct Cecilia’s vision, but I cannot make it happen. I can fight with every ounce of energy and strength I have to give her the life she deserves and to protect her from danger, but I cannot give her the one thing that would facilitate safety and happiness above most everything else.
Life and sight . . . the two things that my daughters have needed most from me are the two things I am utterly unable to give to them.
I am not a visionary, and therefore I cannot understand why such impotence has been asked of me. I am also not a hero. Most days I want to spend wallowing in my own helplessness. But if I have learned anything through all of this, I have learned that it is absolutely NOT about me. It’s not even about what I feel–whether it be grief or fear or loneliness or self-doubt. It’s about them—my daughters. The ones that needed and need me so and for whom I could and can do everything and nothing.
All I can see is the path that is laid before me: a path of grieving a totally irreplaceable child while trying to make the world safe for her little sister. Right now, nothing else matters. It is about what can be done, moment by moment, to make Cecilia safe and warm, to make Cecilia laugh, and to remember Lizzy. Nothing else matters.