Learning to live with a disorder. . . this has been our recent struggle. Finally, the disorder has a name, and we can learn to live with it. Before this, there have been only misunderstandings, frustration, tears, and failure.
A month ago, my eldest daughter was diagnosed with Tourette Syndrome. At first, it was a blow. No parent wants to find out that their child has an "issue." No child wants to be told, unequivocally, that she is and always will be different. It didn't take long, however, for the blow to give way to relief. We finally had a name. We finally could prepare a strategy. We could come up with a life plan and begin to understand our beautiful, unique, sweet, miraculous daughter.
My girl has, for years, suppressed tics. She thought they were stupid habits and would become frustrated with herself for being unable to stop doing them. She felt like a freak. I either wasn't paying attention or she was hiding it so well that I didn't realize what an issue the tics were. I am ashamed to say that I often chided her for her tendency to daydream and told her she needed to do this or that to overcome the 'habits' she was displaying from time to time. I didn't understand why she was instantly moved to weeping when something startled her or when outside stimuli overwhelmed her.
The moment she heard "Tourette Syndrome," she dove into internet research--hours worth. She made lists, found triggers, dietary changes, etc. She was so relieved to finally understand that she had a real and legitimate neurological disorder. Her overactive nerves were the cause of her constant frustration.
Larry and I became instantly supportive and for several weeks after diagnosis, she would get misty-eyed every time we discussed Tourettes or or ways to help her cope. She was so very happy to finally be understood--to finally understand herself. She has decided to embrace her uniqueness rather than hide it. This is who she is, and we can all love her or leave her.
I admire my girl so much. . . she has shown such strength of character and faith in her ever-present Savior, Jesus Christ. I am so proud of her. She is moving forward with her life. I won't candy coat it. . . this disorder has caused her much pain and some big sacrifices but she loves life and is able most days to rise above Tourettes and not be defined by it. She is able to laugh at herself and be laughed with. The Lord has something very special in mind for this girl. He has something special that only she can do and when He lets her know what that is, she will be ready and willing, with a spring in her step and unexplainable joy in her heart.
2 comments:
I have tears streaming down...not because of the diagnosis, but because of the realness displayed and the fact that Jesus remains the center and focus despite the "issue." He definitely does have some awesome things in store--what a testimony you and your family are Brenda! Thank you for sharing, for being real, for allowing HIM to be front and center as an encouragement to all of us. Hugs and prayers!!
An amazing testimony to the strength of her faith. Many years ago our child psychologist told me that when a child is diagnosed with a disorder at a later age, denial is the reaction. And I can tell you from personal experience that they can become inadvertently self-destructive by refusing to help themselves. I am so proud of you and your daughter for meeting this challenge head-on and holding onto your faith!
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