Thursday, November 11, 2010


I woke earlier this week from a dream that I was pregnant again with another set of twins.  This round, I knew both children were healthy—there were no dreadful surprises and freaky autosomal recessive diseases that nobody had ever heard of hiding in the nerves of my children.  In the dream, I was blissful, but a little reluctant that I could actually be the parent of four kids—two sets of twins—at 45 years old.  When I woke, I was disappointed that there was no immaculate conception—there were no new babes on the way.  The dream lingered with me for about 3 days in an unsettling way. I’m getting too old to be pregnant again, and it’s unlikely that we will adopt, foster, or steal another child in order to “replace” the daughter we will eventually lose.  I know this vivid dream was brought on by purging and sorting the dusty box in our living room that held my twins’ baby books, the stack of congratulatory cards upon the arrival of my daughters, and their first birthday cards from relatives and friends.  There was a lot of hope in that box.  And it has gotten real dusty these last few years. I stopped writing in the baby books by about month six, first because it was too hard to find the time to record every little detail of the girls, and later because it was becoming so apparent that while Sylvie’s sister was moving along, Sylvie was actually losing skills.  It just became too painful to monitor their divergent experiences.  So the box has moved with us to three different houses in the last two years, gathering dust.  But I cleaned it out last weekend, and kept the things I thought Sylvie’s sister may one day want to look at for posterity. 

That box was a little more melancholy than the medical records box we’ve been avoiding. I finally have wrestled with the ungodly amount of paperwork that marked Sylvie’s demise.  We have folders upon folders of paperwork from social service agencies, social workers, renowned neurologists, gastrointestinal specialists, nutritionists and pediatricians.  At one point, we were literally taking Sylvie to doctors two or three times a week. And all that documented chronology has sat under a desk, like a giant albatross, just reminding us that our journey in parenting is riddled with a giant medical mystery that nobody can solve. It is a chronicle of grief.   

It’s about damn time these boxes got organized and cleaned out. I’m sick of having them around!  I’m equally queasy that in another 3 years, I’ll have more records and files and paperwork to organize and try to figure out what is important to keep and what is good to ditch. Additionally, with all the markings of “normal” middle class parents with “normal” children we’ve started revisiting life insurance policies, health care and death benefits, and advanced health care directives.   We need a personal secretary!  There needs to be some service, some angel-for-hire service that just sweeps in, cleans the house, purges the bad memories, plans for the improbable and tells us parents of special needs kids that life is manageable. 

We know that being a parent, even a parent to a child who is neuro-typical requires a super human amount of vigilance sometimes.  We try not to get stressed about the constant creative chaos and the inexplicable internal life of our little ones.  But living with a chronically ill kid takes a different kind of constant vigilance.  Not only are we monitoring Sylvie’s seizures, bowels, swallowing, and upper respiratory system, but we need to make sure others who care for her are listening to her needs, even when those needs are often hard to identify.  The vigilance I experience also includes being hyper attentive to my inner world, so that I not only focus on the fact that my daughter is going to die before the rest of us in the house. I love my children and my partner. And there are no guarantees that Sylvie will be the first to go—this was made brutally apparent a couple of weeks ago when one of my neighbors four doors down was murdered by someone known to many of us in town.  Last week, a colleague’s brother-in-law was shot dead in Boston.  Since my own bout of cancer this summer, I know of at least three other people that have far more serious forms of cancer they are battling with right now.  The stories of birth and death are what make for great novels, operas, and theatre.  My housecleaning and vigilance is not for naught.  I want to be vigilant against negative thinking and obsessive fixations on things that really don’t matter.  I can’t have a spotless house, but a little purging and cleaning of the dust bunnies before winter settles in sure feels good.      

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