photo (8)For about a year I was a ghost.  It all started with the official day of Mae’s diagnosis.  Even though we had several days of testing, even though I knew it was coming, even though I should have been prepared, it really only hit me when the report arrived in the mail.  A big white envelope with lots of data to support that my child was about three years behind her peers.  The doctor who had done the evaluation was wise, compassionate and strangely good looking.  The fact that I was able to track his appearance was the one sign I had that despite the fact that my world had been blown open, I was in there somewhere.

The day after the report arrived, the cute doctor and I had a phone call to go over every sentence. The net of the call was, my child was severely autistic but with hours and hours of therapy she would make some progress. It was just unclear how much. It was a good thing I was a ghost, because a real person might not be able to live with that kind of uncertainty.  Instead I put down the phone and went about the rest of my day.  I went to the grocery store, taught some yoga, met my kids at the school bus, woke up the next day and did it all again.

I looked normal, I was functioning, but everything was an out of body experience. My ghost hands made dinner, my ghost legs went for long runs in an effort to exhaust my ghost brain enough to sleep.  There are very few pictures of me from that period of time, she was diagnosed in October and I am in the background of a few photos of the kids at Christmas. Usually just a bony arm, or sharp cheekbones and dark circles.  Ghosts don’t photograph well.

I thought I would always be a ghost.  I thought that my life would be split down the middle.  The first half where I was pink cheeked and hopeful, and the second where I was a ghostly and sad.  The normal operations of a happy life were available to me but I felt nothing as I went through each day. For weeks and weeks I didn’t even cry.  Finally, one night I got in bed with my husband and said, “I am so sad because I really wanted to dance at her wedding.”  We both cried all night. I was still a ghost the next day.

It was a year before I had glimmers of myself again.  At first they were just flashes; for a brief moment I would catch sight of the living, breathing me, and then I would become a ghost again.  Finally, the moments turned into hours, and the hours into days, like the part in the Wizard of Oz when the color seeps into the movie.  I slowly returned to myself.

It has been four years since I turned into a ghost, and a broken heart pushed me out to the edges of my own life.  I know that life has other ways of turning you into a ghost that are unavoidable, but I also know that eventually the color will seep back in.  When I see people who have been turned into ghosts by the loss of a loved one or a vanished dream, I want to tell them that they won’t be a ghost forever, that they will be able to feel and connect and live again.  Sometimes I do and sometimes they hear me. It can be hard to hear when you are a ghost.  My heart still hurts for my ghost self, if I could go back in time to that day when I became a ghost I would tell myself, “Don’t worry, it gets better. You don’t have to fix it. You are doing the right things. Just keep going, it’s all you can do.  You won’t be a ghost forever.”

11 thoughts on “Once upon a time, I was a ghost…

  1. I have found in talking to other mothers that no matter the child’s diagnosis there is a strange commonality of experience…I guess it is the gift of perspective you get from real heartbreak

  2. It’s gonna be hard to be a ghost for long when you have the gift of three amazing children who know you as mom… much love cuz

  3. I really needed this. Thank you for putting words to what I went through. Our stories are different, but somehow similar. Mine was at a very inconvenient, sleep deprived time right after my son was born and diagnosed with a rare metabolic disorder (that now causes him a developmental delay). This exactly describes how I felt for the first 18 months of his life. Thank you for your bravery in telling others what you walked through to be here today.

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