Monday, February 11, 2013

This is my Vietnam

Papa to the rescue.  Decorated Vietnam veteran, coal miner, postal worker, father of four, husband of 40 years, survivor of many terrible difficulties, Naomi whisperer.  Naomi stayed with him, and Grandma, for three days.  He got her bubbas in to her when she wouldn't drink for me or Daddy.  He has always had a way with her.  He has a way with headstrong people in general.  I think it is his ability to be calm in the midst of a storm.  When we were growing up and were in the middle of a crisis or facing some obstacle we thought we could not overcome he would say  "This is your Vietnam!  This is your Vietnam!  Do you think I wanted to go to war?  I didn't get a choice.  I just had to do it.  Don't complain and don't explain.  You just put your head down and keep...moving...forward."  I hated it when he would tell me that.  I would think, Okay, okay.  I get it.  You went to Vietnam, blah blah blah, what does that have to do with me?  But I did it, too.  I followed the advice.  I got the message.  But I really didn't get the real meaning of what he was telling me until Naomi.  Those incidents, those struggles from my youth, were not my Vietnam.  THIS is my Vietnam.  Batten's disease.  Naomi.  Her illness.  Her difficulties.  The struggle to care for her.   I don't want to do it either.  And neither do I have a choice.  It is a long, ugly struggle that is leaving us forever changed, in good ways and in bad.   I don't even recognize us anymore.  We will always be different.  As my dad is different.  He is not like other men who never went to war.  Not bad, but definitely different.

When Papa came home from Vietnam in 1971 he did not receive a hero's welcome.  He was not treated with honor, or even respect.  The war had become unpopular.  He was asked questions like  "So, how many babies did you kill?"  He had been made different by the horrors he experienced in that jungle half way around the world, but the here he came home to had not been made different.  Life here had continued to go on as it always had.  And so he found here was no longer a comfortable place he could move through with ease.  Here had become strange to him, and he to it.  He no longer fit, as we no longer fit.  We have been made different and we have a hard time moving through our world now too.  So many things are so hard.  For example, I have a very hard time when someone has a baby, in particular a first baby, especially if it is a girl. Why is it hard?  Because I remember when we were where they are...all excited and joyful, anticipating with relish every moment we would have with Naomi...the first eye lock, the first smile, the first step, the first words.  Except none of that stuff happened.  Parenting Naomi has been and will continue to be a battle marked by suffering, sorrow and misery that only ends with death, hers or ours. Not that there aren't joys and triumphs, but it is...Just...So...Hard  it fills me with an irrational rage that those other new parents won't have to experience the loss, the sorrow, the grief, the madness that we have.   Innocence lost is gone forever.

Papa didn't get a chance to rest and be safe while he was soldier in Vietnam.  Infantrymen like him were on duty all the time.  There was no base they retreated to between engagements.  They marched from one place to another, on patrol, engaging with the enemy as the enemy presented itself, until it was time to stop for the night.  They slept outside, setting a perimeter where ever they were.  They took turns being on watch and when they slept, it was on the ground in the open air, their M-16s cradled in their arms ready to be used in an instant.  And during the monsoon season, when it rained for three months straight, they did it all in the rain, never dry until the rains stopped.   No camps, no tents, no nothing.   That's a lot what it is like for us too.   There is no rest.  We're never safe.  We never relax.  We're always at the ready, waiting for the next crisis.  We sleep unsoundly, anxiously.   It's so hard.  It's so crazy.  None of it makes any sense.  We don't know what it means.  We wonder, what is it all for?    The draft board sent Papa to Vietnam and cruel chance sent us here.  And so I think of what he told us about being out on patrol.  Vietnam isn't flat.  It's wooded.  Mountainous.  Big, tall mountains that they had to hike over, carrying 80lb packs on their backs.   He told us, when you are climbing a mountain, whether literally or figuratively, "Don't look up.  If you look up and see how far you have to go you'll just lay down and quit.  Don't look up."  I'm trying not to look up.  Because I don't want to see how far I have to go.  I don't want to know if it is a long or short way to the top.  Both are bad in their own way.  And I really don't want to see in advance what obstacles I have to find my way around and over to get there.  I want to lay down and give up most of the time as it is. So I just keep moving forward.  Because this is my Vietnam and I don't have a choice.

Papa as a soldier in Vietnam.

Papa as a grandfather.


  1. Anne and Rob...I've been following your posts for about a year now. I know you through Anne's Mom at church. I've had a chance to meet you and Naomi and Lydia. Amazingly beautiful daughters.

    I just wanted to say that I am stunned to tears every time I read one of your posts. The brutal honesty you write is so heartbreaking. Other blogs might just highlight the triumphs of a child with Battens, but you have written the REAL life of a child with Battens. So much courage to do so. You write what a parent with a child with disability must really feel. On the outside they have to be chipper and all smiley when inside you're screaming, crying, hateful, jealous.

    I enjoy reading about those rare special happy days with Naomi. When she's laughing and smiling and it seems just for one minute things might be okay.

    Thank you for sharing. I have no adequate words to compare your pain with anything I have experienced, so I won't cheapen this by attempting to do so other than to say I admire your courage, and I feel your heartbreak.

    Karen Stewart

  2. Oh my. This post-speaks to my heart so adequately. Beautiful writing, as always and know that I am praying. Thinking of you all every day...