![]() I find myself on occasion having to hide away, and take a moment. My body is overcome by a wave of Yearning, Anger, Guilt, Disbelief, Shock Denial, Confusion, and Sadness. Why am I angry? Why do I randomly experience shock that nearly paralyzes me? It’s grief. I am grieving the diagnosis. All I can do is breath and let the wave pass. Sometimes I want to put a sign up for the world that says; “I am grieving my beautiful little girl’s diagnosis today, I will have to get back with you. I will be okay, I just need time to grieve. Catch me tomorrow.” It hurts so much to sit down and reflect, research, and read about her diagnosis and trauma but it makes me stronger. It helps me learn so I can do my best for her. So, I research and reflect, with racing thoughts, I get angry, deny, and feel guilty about not doing everything right. I WEEP----UGLY CRYING--- SHORT BREATH SOBBING---READING RESEARCH I Yearn for her genetic disorder to magically disappear.
WHY DOES swimming cause an HOUR-long SEIZURE? Why is her morning wake-up call a seizure? Why is the insurance company wasting my time with a nurse that knows zero about Dravet? Why do I have to carry medication in my purse that is used in surgical procedures? Fist in the air I shout “It’s not FAIR.” Then I stand up, take a deep breath, shut down the internet,put the books away, and pull it together. This is hard, but I am stronger than this. Hugs.
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July 2017
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