The Week After

As I wrote a few days back, our daughter was recently diagnosed with a pituitary tumor.  Below is a guest post from Diana Nemergut (my wife, Neva’s mom) about her feelings and our daughter.  More likely to follow in the days and weeks to come.  Again, thanks to so many for all your support.

‘Neva has a brain tumor.’
‘My four year old has a brain tumor.’

Two sentences that were completely foreign one short week ago. Now these are my first thoughts when I wake and my last thoughts at night. One week later and what was once my lab notebook is now filled with words previously unknown including ‘craniopharyangioma’ and ‘sequelae’ and lists of physicians- neurosurgeons, oncologists and endocrinologists- recommended by friends and family from around the world. One short week ago all I was worried about were some nagging issues at work and planning our Thanksgiving trip.

I wasn’t worried about Neva because she was perfect. She is perfect. Neva is equal parts compassion, logic and creativity. A few days before Halloween I found her in her room with a swaddled glow-in-the-dark rat in her lap, reading Rudolph the Red Nosed Reindeer. When I turned to leave her in this perfect moment, she had looked up and asked “How does this rat glow, mommy?”

Neva was asking questions about life and death before she was three, and she seemed to understand already that the world was bigger than her. She has a healthy skepticism – when Santa was explained to her last year she questioned how he could travel so quickly and so far. She wanted to know how his sleigh could stay positioned on steeply pitched roofs. This year, she developed a full-blown logical proof: ‘If magic is not real and Santa is magic, how can Santa be real?’ Yet, she fully embraces the dress-up holidays of Halloween and Mardi Gras and loves make believe. Neva wore a Spiderman costume with a tutu for Halloween last year, and a Spiderman costume with a pink boa the year before. Her costume for next year is already planned. Neva just wants to know where reality ends and where her imagination can begin.

Of course, it’s not that I didn’t worry about Neva until last week.  I think about her constantly. I worried about which kindergarten to send her to.  An IB program? A Spanish immersion program? I thought about how early she could begin music lessons and what instrument she should play. But mostly I worried about how to bring her up with proper values and motivation, how to teach her to work hard and to be truly grateful and aware of all of her advantages. I worried about teaching her discipline – was making her do dishes each night really enough? What went through her mind when we counted her blessings before bed and she said “I’m grateful for Jenna, Joshy, and baby Emma?” I worried if we were really teaching Neva the single most important life lesson – that every single person has value.

These worries were replaced wholesale with systemic dread the moment that Alan and I were encircled by a neurosurgeon, an oncologist, a radiologist, an endocrinologist and a therapist before Neva even had a chance to shake the anesthesia from her tiny body after her MRI last Wednesday. This feeling has now taken over my mind and my heart, keeping me from knowing if it is day or night and whether I’m hungry or full. This feeling prevents me from being able to compose a simple email to thank a friend for her sincere well wishes.

There is something familiar in this feeling. When I was pregnant, my belly never grew beyond the 29-week mark. Ultrasounds, stress tests, blood tests, genetic screening – Neva and I passed every exam and each visit the doctor would eventually shrug and say ‘I guess she is just small’. But I couldn’t escape the dread. I couldn’t let myself relax and look forward to her birth. When she finally came into the world, after an easy labor and delivery, she could not breathe and was rushed to the NICU. I remember thinking that this was the moment I had been steeling myself for. I couldn’t get attached – she would not survive.

But she did survive. And she was healthy. She left the hospital at just five and a half perfect pounds. And she ate and cried and smiled and slept and pooped just like she was supposed to. Still, for some months I could not shake the dread.

I remember the turning point so clearly. She was five months old and we had all flown to Mexico for research. One day, after all of our work was done, Alan and I sat under a palapa, staring out at the ocean, eating ceviche and listening to schoolchildren singing Christmas carols. A young waitress spied Neva, and without asking, plucked her out of her car seat. Neither of us reacted. The woman cuddled Neva, walking around the open-air restaurant, showing off our perfect child. Alan and I sat in silence, holding hands and watching the waves. Neva returned to the table in the leathery hands of a tiny old woman who held Neva up to show her the ocean before resting her back in my arms. The woman couldn’t speak a word of English but her cloudy eyes clearly said: “This baby is a miracle. A true miracle.” I had finally let go of all of the fear that ruled my body and mind during Neva’s gestation and birth and I knew she would be okay.

In a few days, I will need to find that faith again.  A faith that seems almost natural during magic moments on remote beaches after the science experiments are done, but a faith that my brain tells me has no place in science, in medicine. Today we will meet with Neva’s surgical team and ask about numbers of procedures, outcomes and complications. We will press them on who will do what and the specific levels of experience among the surgeons. And then we will be left with numbers and statistics that I ultimately have no idea how to judge. And I will have to find a way to give this neurosurgeon that same faith that I gave to the old woman on the beach.

Last night we gave Neva a set of fairy wings to wear to the hospital today. She put them on and pranced around, dancing to 80’s music. After a while she asked ‘Mom, how are fairy wings made?’ I struggled to conjure up a tale involving dragons and moon dust, and she quickly interrupted ‘No, I mean, how are they really made? Is this a coat hanger or something?’

That’s my girl.

5 thoughts on “The Week After

  1. ahastings75

    Love, love, love your descriptions and the connecting of moments. You capture the essence of life in general, the beauty often tinged with sadness. We all have so many possible things to fear for our life and our children but we must allow ourselves to have more hope than fear. Keep seeing the beauty as you so wonderfully described above.
    Neva is absolutely amazing and she will persevere with two loving parents by her side. Thank you for sharing miss you.

    Reply
  2. Robert Hawkes

    My thoughts are with you and your truly incredible daughter. I am sure your strength in writng and sharing this will bring deeper meaning of life to so many. Thank you.

    Reply
  3. Pingback: The Tidal Wave | Alan Townsend's Blog

  4. Pingback: What is a craniopharyngioma and what are we doing about it? | Alan Townsend's Blog

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