Brave

The day before yesterday, Cecilia, my father, and myself spent the day at NIH’s Eye Institute having our worst fears about Cecilia’s lack of vision confirmed.  The NIH physician-scientists were very gentle, very kind, and very thorough.  After reading through the records from the long string of doctors Cecilia has been to in her very short life, they performed a series of tests on her, dilated her eyes, and took pictures of the back of her eyes. 

Very gently, they broke the news to us that Cecilia eyes are showing all the signs and symptoms of a very rare genetic retinal disorder that will, in all likelihood, degenerate over time into total blindness.  She has been enrolled in a series of genetic testing that has a 60-70% chance of telling us which genetic variant she has.  We also learned that about one third of patients with genetic retinal disorders have other gene variants linked to things like kidney or liver disease and even neurological degeneration.  We were told that somewhere between 1 in 50,000 – 1 in 100,000 children are born with a genetic retinal disorder.

Somewhere around the time that they were showing me how Cecilia’s current vision can only see the largest “E” on a vision chart, I began thinking of how Lizzy, at six months of age, crawled across my bed to reach a band-aid wrapper that was barely visible against the white of my duvet cover.  I thought about how at fourteen months old, my older sister babysit Lizzy and told me afterwards that she had pointed at the 2-second clip of Lord Grantham walking his dog in the Downton Abbey credits and pointed out, “Dog-gy.”

I thought too of how both my sisters had asked me in worried tones why Cecilia does this “Helen Keller-like” thing where she grabs at the face and mouth of whoever is holding her in order to identify them.  I thought of the hundreds of tests I had performed on Cecilia at home, in the morning, in the afternoon, in the evenings—even at night—where I had finally concluded that she was visually responding to me and to her environment.  And so she was, as the doctors confirmed.  She has some vision.  But instead of comforting myself that her vision might improve with age and time, I thought of how the years may now bring only a blurred conglomeration of light and color, or, at worst, total darkness.

These thoughts drummed like a cascade of white noise through my head while I desperately tried to juggle keeping Cecilia calm with listening and trying to understand what the doctors were telling me.  However, at the words “possible neurological degeneration,” time seemed to freeze, blend, and merge, and I could have just as easily been in that horrible conference room at Children’s Hospital with the neurologists telling me that there was less than a 1% chance that I would ever get the child I had known as Lizzy back.  Those prophets of despair calling themselves neurologists instead informed me that the much greater likelihood was that Lizzy’s brain would swell into her brain stem, causing total brain death.  And, less than 12 hours after those heavy, impossible words had passed their thin, empty lips, they were proved true. 

I held Cecilia closer, feeling her tiny chest lift and fall as oxygen filled and emptied her still-working lungs.  I rubbed my numb lips against the fine, silky strands of her hair, so much darker than her golden big sister.  I thought about the term “epigenetics” and asked the question that has haunted me since I first learned that Cecilia’s eyes were damaged. 

“This is a very ignorant question, as all that I know about epigenetics is that certain genes will manifest under stressful conditions and not under optimal or ideal conditions.  I also know that a lot of eye development happens in the ninth month of pregnancy.  I spent the last month of being pregnant wishing I was dead because Lizzy had died . . . Did I cause this?”

The resounding “no” with which this question was met provided little comfort.  Even if I hadn’t caused this, I had some of the best scientists in the nation telling me that I might spend the next decade watching in slow motion as Cecilia’s vision and brain function gradually darken. 

When Lizzy was on life support, I wanted to die so that she could live.  I wanted to substitute my life for hers in a way that wouldn’t sacrifice Cecilia’s life in the process.  Now, I want to give my sight or my hearing or my brain or my life so that Cecilia won’t have the life that is laid out for her. I want to make deals with God or Fate or Time. I want to bend and shape the rules of existence so that my daughter—daughters—can be the exceptions.  I want to scream to the firmament that I do not deserve the thirty plus years of easy life that I have squandered.  I want to trade all the remaining years of life and health and joy that I have to give Lizzy back her life and give Cecilia back her sight.

Instead, I quietly thanked the doctors and walked downstairs to the phlebotomists to have my blood and Cecilia’s blood drawn for testing.

The day at NIH may very well have been the worst day of Cecilia’s life, not because of the news that was given to her mother, but because of how much of the day she spent miserable and exhausted.  I work very hard to make sure Cecilia is warm, loved, nourished, happy, and healthy.  If I timed the amount of time she spends crying every day, it is probably no more than 10-15 minutes a day–if that.  She simply has no need to cry, other than to occasionally communicate hunger, discomfort, fear, or fatigue.  And when she does, I meet her needs.  At NIH, I couldn’t control the environment or the conditions.  I worked myself without stopping to try to make it as comfortable and familiar for her as I could, and I failed miserably. 

All day, she had people shoving lights and instruments in front of her eyes, putting drops in her eyes, checking her vitals, forcing her to stay still.  She was surrounded by strangers and unfamiliar stimuli, noises, and smells.  People kept talking to her, prodding her, trying to get reactions from her. When she nursed, she nursed fitfully, and none of my tricks could calm her down.  Twice, she cried herself to sleep in my father’s arms because I had to talk to the doctors or have my blood drawn.  She was exhausted and confused and miserable. And yet, through the second half of the last examination that the doctors did on her eyes, she giggled and chirped and charmed them as though she was flirting at a sunlit garden party.

We waited to have Cecilia’s blood drawn by a pediatric phlebotomist. I sat staring at the gleaming, white floors and the pristine blue fish tank while Cecilia slept, beyond exhausted, in my arms. I woke my little girl only minutes before we sat down in front of the phlebotomist, and he extended her tiny, chubby forearms out in front of her.  Still, she didn’t cry or fuss, but babbled pleasantly to me, explaining what she was seeing and feeling around her.  I spoke quietly to her, telling her what was happening and what was going to happen and why it was happening.  With total trust, Cecilia let the phlebotomist tie off her upper arm to find a vein. 

And suddenly, I was in the emergency room with Lizzy as she fitfully pushed at the purple-gloved hands of the nurses trying to insert an IV line.  The attending doctor gave me a grim smile and said, “I’m glad she’s fighting us.  You don’t want to see the kids who don’t have the energy to fight us.” 

I could see the thin, blue line of the vein the NIH phlebotomist had chosen.  It looked so tiny and so fragile that it seemed impossible it could contain the amount of blood they would need for testing.  But then the needle slipped into the white, tender flesh and Cecilia screamed, throwing her head back against me, asking for help, asking for understanding. 

And I was back in the emergency room, with Lizzy lying on a gurney, hooked up to innumerable tubes and machines. Lizzy’s head turned to the side, looking at me with pleading in her gorgeous, blue eyes, sunken now with dehydration, fear, and exhaustion.  I stroked back her beautiful, golden hair, and whispered to her, “They’re going to put you to sleep for a little while, my darling.  We need to take you to another hospital.  They’re going to put something over your mouth that puts you to sleep.  Then they’re going to help you breathe, then we’re going to fly, real quick, to a place that can help you.  You’re so brave, my darling.  Mama is so proud of you.  We’re going to make it all feel better.” 

The thin red line of Cecilia’s blood ran through the tubing.  I held her tightly, saying, “My darling, you are doing so well.  You are being so brave.  I promise you Mama wouldn’t be doing this if I didn’t think it could help you.  It’s almost done, then we’re going to go home, have some milk, have a shower, and have some good sleep.  You’re so brave.  It’s almost over.” 

I was forced to leave Lizzy’s side before they anesthetized and intubated her.  The second the phlebotomist had put gauze and a bandage on Cecilia’s arm, I got up and walked quickly away, holding her, praising her.  I walked as fast as I could to the waiting room, wanting to run a thousand miles, to scream until I lost my voice, or to break through the atmosphere, fly into the ether, and somehow find Lizzy there. 

I have said before that I am a coward.  I struggle constantly with self-pity, unable to accept what is being asked of me.  I know that I am a coward because I have seen the face of courage.  I have seen it in the total trust with which Lizzy looked at me the last time I saw her awake.  I saw it again in Cecilia when she woke from her nap only to encounter more pain and more fear.  And yet, within minutes she had calmed in my arms, in total trust that I would make it okay again. 

What do we, as parents, do with this burden of trust?  Our children believe that we can fix this broken, broken world and we, fools that we are, participate from time to time in this fantasy.  But I could not save Lizzy, and I cannot now restore her to life.  No more could I prevent Cecilia from having this condition, and all the science and technology in the world cannot return her eyesight to her.  I am a coward, and I am a helpless coward.  I no longer have the luxury of believing otherwise.

But I can tell you that when I think about the word “brave,” I think about my daughters.  I think of the type of faith that it takes to surrender yourself to unknown pain, suffering, and even death, with the fullness of love and trust in your heart.  I felt and saw in Cecilia the same courage with which Lizzy had faced her death.  She went to God in total trust.  In beautiful, hopeful self-abandon. 

I cannot give Lizzy back her life.  I cannot give Cecilia back her sight.  All I can do is try to live by the example that they show me.  And fight like hell—or heaven—for every single second of life that I get to share with them. 

After all, a saint and a superhero both chose me to be their mother.  There is no room for cowardice or complaint.  There is only room for gratitude.  And the attempt to be worthy.

And brave.