This is so incredibly true…and the questions can be frustrating when the caregiver is constantly asked if the dystonia patient is better, when we have a progressive disorder that doesn’t get better…not in the many years we have had it. I quoted the last part of the last line before my daughter finished reading it to me because I know what I wish people would ask. My hubby was totally honest once, and just mentioned I had a seizure…and things weren’t good. That’s pretty much always the answer. He can’t always truthfully sugar coat the realities with which we live. Abby, my daughter, is a huge part of the care giving process in this home. It’s why she is considering being a nurse. She comments on this post…it’s sweet, but heartbreaking to this mommy’s heart. Please read! Josh Farnsworth’s wife,Rachel Farnsworth, writes the piece. Just click on the image above this paragraph. Or here…. https://www.mydystonialife.blog/2019/07/forgetting-caregiver.html
Sharing about the disorder that affects almost every aspect of my life has never been easy for me. I’ve had the disorder over 25 years, yet there is a lot about it i don’t share. My mom, two brothers, and a sister have been diagnosed with it. It is different in each of us. My oldest brother has many of the mental issues and the dystonia seizures that I have. He has started a new blog to put his musing into the written word. It’s been therapeutic for him, and I highly encourage him to continue. I painfully know all to well of what he is speaking … that makes it hard. I got it first and for many years no one else showed signs of it. It was sad days when our family realized it wasn’t going to just be me. My sis got it next. I was crushed. My brother, Joshua, got it at 30. We have always been close, and we are close in age. I don’t remember life without him. I want to really encourage anyone who reads this to please read and follow my brothers page as he works through this disorder in his own way. Go here-
He puts into words so much what it is like…and admits things about it I never have. I love all of my siblings more than any words can express. I was the oldest so I’ve loved them ever since they were born. Watching is hard…the comfort??
GOD KNOWS BEST!!!!
He is our Heavenly Father and wants what is best, but it isn’t easy. He didn’t promise that. He did promise He’d be with us as we live out the journey…the story He has written for our lives. Please visit this blog…perhaps leave an encouraging comment. Feel welcome to tell him his “ little sister” as he calls me, sent you! 😊 Some pics I had to share! I have lots, lots more…but I won’t bore you with them all.