Anonymous

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  1. Right now I hurt. I am grieving for the loss of my child who is still living. It's grief more exquisite than I have ever felt before. It comes in waves; sometimes the pain is acute, but it's always present and very heavy. Ever so slowly my active, happy, energetic, loving child is being taken away by a horrific disease called schizophrenia. I hate it, and I really mean hate. This disease blindsided me. It does not run anywhere in our families. I never thought I would have to reassure my child that there are not holes in their hands or that their skin is not falling off of their body. I never thought I would have to rebuke the voices that were constantly bullying and demeaning my child, telling my child things that are unthinkably mean and cruel. I never thought that I would have to hide medications and reassure my child that killing themselves will make things worse, not better. My child is no longer fluid in motion. They walk around rigid, almost paralyzed with paranoia and anxiety. I have to be extremely cautious with what I say as even the slightest hint of disapproval from me about even menial things can trigger an episode. I feel as if I have lost my child, but there is no closure, nor will there ever be for the foreseeable future. My child is also grieving. How do I comfort a child that knows they are losing touch with reality? They remember when school was fun and easy, and when it was possible to stay on task and learn. They clearly remember how they used to be in contrast with how they are now. I will not lie to them, so I reassure them with hope and love the best that I can, even though we both know the outcome for early onset schizophrenia is not very good. I am sharing my feelings here because I can't really share them with anyone else. The stigma that is associated with this disease is bad and we have only informed our closest relatives of our child's condition. I used to be one of those that though schizophrenia was all about crazy, violent, nut cases. I wish I could have learned that my preconceived notions were predominantly false in a different way. I am finding comfort in the tender words of our church leaders. I appreciate them now more than I ever have. Elder Holland's words are very reassuring. Elder Faust's words are particularly poignant to me right now. He said, "I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child. Not infrequently, parents are required to give superhuman nurturing care that never ceases, day or night. Many a mother’s arms and heart have ached years on end, giving comfort and relieving the suffering of her special child." I testify to all of you that the anguish he speaks of is real. So I ask just one thing of you all. Be compassionate. Give comforting words. It might seem like someone is being a slacker or being a completed turd in their calling at church and it might be true. It also might be that they are spending more time with their child, suffering in silence, getting in as many good memories as possible, having no idea how much more of their child's mind will be taken and destroyed by a disease with no cure. I still have hope and faith. Medications are tempering a lot of the symptoms. We discovered the disease before a major hospitalizing breakdown happened, but even with this hope and the comfort of Jesus Christ it is a very heavy burden to carry. Please pray for my family. Thank you.