I returned to the specialty hospital today to hear the results of Grace’s neuropsychological testing.  I went alone.  There was a huge back-up in the parking garage so I was late.

I sat down with the neuropsychologist in her office.  She sat across from me.  She inhaled and looked at me, paperwork in hand.

“Do you remember what you said to me when we had our first meeting? You told me what Grace’s psychiatrist told you when she diagnosed Grace with schizophrenia.  She told you what she had, and she told you that the prognosis wasn’t good.  Well, I’m going to take my cue from Grace’s psychiatrist.  I’m going to tell you what you already know.  You came in here afraid that Grace was declining.  I’m going to tell you that she is, and the prognosis isn’t good.”

I knew.  But, when someone tells you and they show you all the data points, well, it’s stunning.  I felt a lump form in my throat when I heard the phrase “cognitively impaired” and “broad impairments” and “classic presentation” and “neurodegeneration”.  I knew what the results would be before the testing, but knowing and having the hard data feel different.

I had hoped that she might have leveled off.  I had hoped that her IQ would not have dropped.

I hate this disease.  I hate it.

I just hate it.


22 thoughts on “Sniff

  1. I’m sorry to hear this news. I have come to love you and Grace through your courage and resolve. Grace will always have something no one else does which is you as her mom. She’s truly a lucky girl. The situation sucks but none of those results effect your love for each other.

    {{{Hugs to you and Grace.}}}

  2. I don’t know what to say, no one wants to hear their child has gone backwards. If I could reach through the screen to give you hugs I would.
    You are also an amazingly strong woman and this is merely another bump you must travel (if I’m wrong here, I’m sorry). You will come out the other end, wiser and stronger.

    • Thank you, Jennifer. It is another bump, that is for sure. It is part of our journey. It’s one I feared, and now the day is here. Time to face it. Once I get a grip, I’ll figure out a way to reframe it. I think I had just hoped against all the evidence that what I was seeing and observing wasn’t true. It’s just sad. I want so much for her as I do for all my daughters. To finally see the evidence that she’s lost gray matter…that she is now officially labeled as “cognitively impaired” and has to have modified curriculum at school…when three years ago she was thriving and in gifted reading groups…to see her lose all that due to neurodegeneration brought on by this disease…I am, at the moment, so angry because it’s just wrong. And, this is true for so many others. The weight of it is bearing down on me. My girl isn’t the only one. She has dreams, you know? She remembers how she used to be. It’s just painful to see this happen in someone so young. I want to find a way through…for her. For others like her. For families like ours.

  3. I’m sorry to hear this. For me, when I realized my daughter had/has issues, I went through sort of a mourning process. As parents we want so much for them and when life throws a huge wrench into those plans it really sucks. Thinking of you and your family.

  4. I am so sorry, you are right it is different knowing in your heart and hearing confirmation. There is not a single thing any of us can say to you other than we are sorry there is nothing we can do. We can form a support system of hearts and ears, this will never be enough but perhaps it will be something.

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