People who equate truth with fact are missing the point.

Fear

Since we have no firm mental health diagnosis for Carter (and wouldn’t want one; the chances of it being accurate while Carter is so young are slim), we also don’t have much by way of prognosis. It’s a challenge for us to stay loose, open to what the future may bring. Perhaps we are “just” dealing with severe anxiety, sensory processing dysfunction, and a combination of mild developmental delays. Maybe he will learn to cope with all of those things better as he grows older and will become a competent, comfortable man. Maybe, though, it’s something darker. The ugliest possibilities include the chronic, devastating mental illnesses like bipolar disorder, schizophrenia, or the terrifying combination of the two, schizoaffective disorder. Not that anything terrible is a foregone conclusion with any of those, either. Sometimes, with the appropriate medications and supports, people with those neurological differences live good lives.

Bottom line, my greatest fears are around Carter’s sense of well-being, his feeling of belonging-ness in the world. I look back on these first 7 years of his life and it takes my breath away, the amount of pain and fear he has suffered. He told me recently that he’s been afraid every minute of his whole life. That same day, he was angry and out-of-sorts and he told me, coldly (not in the tantrumy, please-react-to-me way that he sometimes does) that he would kill himself someday.

Dear God, save us all. If we can’t find ways to get him more comfortable, if he still feels this chaotic and scared and angry by the time he’s old enough to tie a noose or unlock the medicine cabinet or drive a car off a cliff… well, I don’t want to finish that thought. I try not to think about it, because what can I do other than make this day the most healing day possible? But always, at the back of my mind, there is this stark and hateful awareness that Carter may not be with us for long.

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2 comments to Fear

  • Ouch! Reading this hurts.

    I relate to your position last year of not having a diagnosis, yet being challenged in not having a prognosis. I guess this hits it on the head for me. Everyone keeps saying, why do you need a diagnosis? Would his treatment change? Reading this helps define what stirs me inside, I can’t have a prognosis without a diagnosis. Our doctor still says, oh maybe he’ll outgrow this. Yet now he hears his voice being called, and I saw behaviors that were extreme when we tried to remove his tenex this month. I don’t feel comfortable with the “he’ll probably outgrow it” stance, it makes me feel like no one is taking his case seriously. It’s like I have this gnawing pull in my heart that my son may always be ill, but no one else see it–this pisses me off!

    So from here to where you are now, what changed? How did you finally get a diagnosis and what brought that about?

    • It’s almost impossible to find people who know how to find that place where they’re not minimizing the issues, but they’re also not taking away all hope!

      Last summer was when everything changed for us. The bipolar diagnosis had been one of the possibilities for about a year by then, but that summer he was in terrible shape and for the first time, no matter how far we stretched, we couldn’t make ourselves believe it was “just” severe, complicated ADHD anymore. By Christmas, bipolar was his official, primary diagnosis.

      Since then, he’s begun to have psychotic symptoms which took away all of my hope that maybe we would be able to back up and remove that bipolar diagnosis someday.

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