Friday, October 14, 2011


     Having a child that is profoundly disabled, having a child with a terminal illness, is a profoundly isolating experience.  There are just not that many people who truly know anything about what it is like to live this life...waking up every morning to the knowledge that Batten's disease and mitochondrial disease are still true, to the knowledge that, yes, Naomi is still suffering from diseases that will take away her life;  to the grinding care for a child who needs aid and assistance for every minute of every waking hour, to play, to eat, to drink, to move from place to place; to the knowledge that the gradual independence other children achieve day by day as they learn to crawl, then walk, then express their needs, then do for themselves, is something that Naomi will never achieve, that she doesn't get more capable every day, she just gets bigger and heavier.  When parents talk about being frustrated that their toddler keeps ripping apart their kitchen cabinets, or being sad that their children are growing up, I just can't relate.  I  can logically and intellectually understand the sentiments being expressed, but those things are far outside the realm of my experience, and those kinds of experiences are something I desire so savagely I think I might be blown to bits by the force of my longing.  When I speak of isolation, I do not speak of loneliness.  I am not lonely.  I do not crave company or entertainment or distraction.  What I crave is for Naomi to be well, to be healthy and whole, to have a future that is limitless, bounded by nothing but the scope of her imagination and the force of her talent.  And that is isolation.

     Many people, when they go through a life shattering experience will ask "Why not me?"  Why shouldn't I be the one with the disabled child, the inoperable brain tumor, the husband paralyzed from the neck down.  I also ask "Why not me?"  Why shouldn't I be the one with the healthy child, the child with a future, the easy, take-for-granted happiness that most people habituate to upon the birth and maturation of their children.  They are really the same question, though.  What that question really is, is one of deserving.  And the answer to that question is, I did not deserve to have a sick child, no one does.  However, the flip side of that answer is equally true.  No one deserves to have a healthy child either, including me.  But having a healthy child is an ordinary, inclusive, common experience.  Having a sick one?  Isolating

I took this photograph of Rob and Naomi on June 30, 2010, the day we received her definitive diagnosis of CLN5 type Batten's disease.

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