Sunday, July 27, 2008


On Friday, I received absolutely terrible news.  Just a few months ago, I met another mother whose child also had multiple disabilities--we corresponded by email about our children's issues and our own struggles and worries.  Last Thursday, unexpectedly, her child, who was otherwise stable and in good general health, passed away.  I don't want to focus on this because such a thing is a private matter, and it would be inappropriate to say any more than that.

But this event, combined with an email I received this past week from my cousin, who also has a special needs child, and the findings from Robert's MRI last fall, has shifted the ground beneath my feet once again.  My cousin's son has a genetic disorder, and she has been very active with organizing and fundraising.  In the email related to her latest effort, she noted that researchers were hoping to find the reason for the high incidence of sudden death in adolescence from this genetic condition.  Robert's latest MRI findings have left open-ended questions about his life span that no one can answer, and it's terrifying.

Once I accommodated myself to the idea of Robert's disabilities, once I realized that they would endure, there has been a feeling of permanence to both the handicaps and to his existence.  For a long time, because his illness was precipitous and because of his partial response to some drugs, we hoped to find some sort of answer that might mend him or bring him back to us--the infant that we lost.  This kept us going.  

I don't want to say that we've "accepted" Robert's disabilities, because I don't agree with that language.  I don't think that applying the popularized five stages of grieving over death makes sense when you are dealing with the life of a child.  Children grow and change, and "acceptance" signifies a certain finality or ending.  But one accommodates.  The mind tries to create a stable field.

Robert has become the necessary center of our lives.  We live where we live because the school system, despite its often glaring defects, can offer us something valuable for him.  People don't understand this--in a couple of situations where privacy demands I not reveal details, people I am close to have suggested that moving to a less expensive part of the WDC area might make sense, as though, sure, it couldn't matter where Robert went to school, that he'd get the same services and education anywhere.  Understanding the complex way in which IDEA is parsed at the level of the individual school is not something most people can get their minds around.  

And IDEA is the least of it.  There's accessible housing, job commutes and specialized childcare, switching social service agencies, health insurance issues. My life is held together by strategically placed safety pins.  A lot of people don't even see them.  

I have the job I have because I have access to federal health insurance.  The federal groups are so large, the contract is so big, that the insurer doesn't see my family and my child as a threat to its profitability.  The last 2.5 years have been among the most restful of my life--if it's in the contract and our doctor documents it properly, we get it--no screaming arguments, no 53 phone calls, it just happens.  Until I had this insurance, I spent 10 or more hours a week, on average, dealing with medical bills and medical administrative processes.  Does this job work for me?  Yes, on many, many levels.  Are there other jobs in other fields I might like to have?  Yes.  Does this job allow me enough time to pursue my dreams and talents as a writer?  Sometimes.  

My husband does what he does because if he works it right, we can support our needs for housing in the good school district and the additional household help we need beyond what the state provides so that we can manage our personal lives and have time for some of the things that matter to us.  We can't take much in the way of family vacations or weekends away because Robert's disabilities and the level of care he requires do not lend themselves to much spontaneity.  I miss spontaneity a great deal.  So we compensate with additional childcare to prevent ourselves from becoming emotionally burned out.  

But everything, everything, is built around Robert.  It has to be this way; there are no choices.  And what would happen if he were not here?  Despite our intermittent and completely understandable longing for a less complicated, less rigid life (wishing Robert were a well child, not a sick child), it is impossible for me to understand what my life would be like if Robert were not here.  What would my identity be?  What would be my goals?  

My life has been balanced on the see-saw of trying to forge for myself an identity in addition to mother of a disabled child, yet acknowledging that that is the case.  To be released from this is not to be set free.  Just as Robert is dependent on us, we have become dependent on him--caring for him has built us in ways that are impossible to fathom.  I do not know who or what I would have become if he had not been my child.  

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