Tuesday, November 30, 2010


It's said that your life changes in small moments.   Everyone expects life changers to be big, but so often  they're not.  Sperm enters egg, squeal of wheels, phone ringing, a small room with a table.  Everyone worries and wonders, trying to anticipate tragedy - not if, but WHEN something goes wrong.  Please God, just don't let it be my kids.  But you can never anticipate when it finally does. 
Hanging up changed my life.  I felt the 'click' in my head like the phone - life is different now.  Life is over now.  All done.  I saw of future where any chance of future happiness was extinguished.
To describe the emotions that follow is practically impossible - a grief so raw that it's primal.  I lived the true meanings of words - anguish, pain, devastation, suicidal.  My son was alive, not dead, but i grieved for the loss of what I thought his life would be. Loss for me, my son, my daughter, my husband. My daughter could be a carrier of Fragile X and pass it to her children.  I grieved for the loss of my 'perfect' family, my end of normalcy, the end of 'as long as my kids are OK, I'm OK.' 

The next few months were a complete fog.  Looking back is like trying to remember a drunken night - gray, with glimpses of faces, snippets of words, half memories.  I couldn't wrap my brain around it.  I kept repeating in my head over and over "He's retarded.  A retard.  Retarded.  Retard.  My son.  No. No. nononono."  I couldn't believe I had done this to my beautiful blond baby, he was barely 20 months when diagnosed.  He was a BABY.  I looked at him and feared what he would grow into.  To read any book about Fragile X - severe behavior problems, aggression, seizure, heart problems, moderate mental retardation, autism symptoms - the possible horrors went on and on.  I remember saying to my husband repeatedly "I can't do this.  I can't do it.  I can't."  And my husband looking at me and saying "You have to."
I was suicidal, knowing that my gene caused this.  I thought about the bottles of pills in the cabinet.  I felt the harm to my family was immeasurable.  I hated myself, blamed myself, this is my fault, I'm defective and broken and I've ruined my families lives.   I couldn't fall asleep, couldn't stay asleep, would wake to find myself sobbing, my husband waking to hold me.  I couldn't eat, my body rejected food and I lost almost 20 lbs within two months.  I didn't want to talk to people.  "No one understands" is a cliche until you feel it's true.  I told my husband to leave me, to go find a wife with good genes who could give him 'normal' children.  I was wracked with guilt for doing that to his child, how could he forgive me? He looked at me incredulously, blaming me hadn't crossed his mind.  I wanted people to know, but I didn't want to talk about it, how could I when I could barely grasp it?  I made Jenn tell everyone at work, they had been waiting for the test results along with me.  I sent out group emails to friends and family telling them.  Then, randomly I would have an impulse and I would tell virtual strangers.  Old friends on facebook, a neighbor I barely knew, a friend of a friend.
I ached with hatred of myself.  I hated myself, what I had done, what did I had done to cause this, how bad a person am I?  Is this fate, God, punishment?  I'm broken, shouldn't breed, I'm who Darwin was talking about.  I felt that there must be something intrinsically 'wrong' with me, I was born bad.
Angry and jealous of many with 'healthy' kids, especially those I felt 'didn't deserve them' like child abusers I would read about in the newspaper every day.  Or some of my clients.  I would click through pictures of families on facebook, people I didn't even know, thinking how they were all 'fine' and why, why me, why my son, why?  I was angry at my father's family for giving me the gene.  I had a hard time facing friends with same age children, afraid to see what their kid did that mine couldn't.  I alternated between extreme sadness and rage.  I was even angry at the lady at the gas station nonchalantly talking on her cell phone while pumping gas, while her young daughter sat in the backseat.  I yelled "You're not supposed to talk on the phone while pumping gas!!!"  She gave me a dirty look and said "Uh, sorry." 

I would go about the normal routine, send the kids to school/daycare, drive to work and sob hysterically in the car.  I would get to work, walk in, see my coworkers (who thankfully for me and unluckily for them are my wonderful friends) and sob more.  I remember collapsing in the mail room, sobbing on the table in my boss's office, crying in my office while my friends watched wide eyed stunned and speechless.  I remember hands patting me, soothing words, lifting and putting me places less public.  One of my young therapist friends went into 'work' mode with me, I yelled at her "Don't therapize me!"  We later apologized to each other, me for snapping, and she admitted she was shocked to see me like that, she always viewed me as her 'strong mentor' and apologized for being a therapist instead of a friend.  There were times I would be at work before I realized I was NOT ready to be at work. Hysterically crying women do not make for the best therapists.

I remembered the eyes of some professionals I had seen throughout the process - I recognize in them now what I didn't then.  So many of them had wanted to appease me, saw my distress, and reassured me.  So many times I heard he was 'fine' - then I heard that he 'could be' fine - then there was 'still a chance' he would be fine.  But what I remember most is the eyes of the few who knew something was wrong.  Warm eyes of concern, sympathy, pity, and something else.  Now I know what they saw - my future laid out for me as they had seen so many times before.  They knew what I would have to face.  My future. His future.   The endless possibilities of the things that can go wrong. When I would tell someone about Owen's diagnosis who knew what Fragile X was, they would look at me with horror, as if as if someone had died, a look of death.  Those faces terrified me and went around and around my head.

The irony of this killed me.  I was supposed to be the professional, giving the bad news! I counseled moms who had kid's with special needs! And siblings of kid's with special needs! How many times I had been in 'the other chair,' explaining to parents that their child has been sexually abused, physically abused, bullied, self mutilating, hearing voices, permanent mental health diagnosis.   So many times I had given devastating information to parents and knew the issues these kids could suffer many years from now.  And now...role reversal.  I'm in the wrong chair.


  1. Would you have delivered the message differently to families now?
    I remember all the deliveries of messages. One message i will never forget has continued to scar me...
    Sadness is so strong..

  2. I look at it totally differently. Before I was just relaying information, albeit it's my job and the intent is for the best interest of the child so they can receive appropriate treatment.
    However, delivering the news IS part of my job, but now I know that helping the parent cope with the diagnosis is part of it too.


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