Things were going so well. I should have known better than to think of a bright future. I should have known better than to hope for a normal year without hang ups and band ups. Shame on me.
Out of the blue, Sarah informed me around 3:15 this afternoon that she woke up this morning, and in her words, "her eyes were going bad"...again. She had been melancholy today and I did not know why - now I know.
As we were told to do with any significant change, we called her neurologist at the Mellen Center who informed us that we are to head to the ER tonight to get her started on a 3 day course of steroids. Again.
I feel that every time the sun peers through the clouds for our family a huge rain cloud comes along pouring rain down on our hopes, plans, and dreams.
While we are waiting for Bob to come home from work Sarah is playing with her brother and sister. (Josh is at a friends house.) The music is blasting One Direction in our home and Sarah is doing her best to hide the sadness in her heart.
By now we are used to the routine that comes from being hospitalized so many times in so few months, but I am starting to becoming increasingly concerned about the long term effects these drugs are doing to her body. Maybe it is time to start having conversations with people about the possibility of blindness being in her future. If that is the inevitable end result why keep on pumping these drugs in her body? Why try to stop something that is going to happen irregardless of what medical interventions we try and take? Do I want Sarah to lose her vision? Absolutely not. But steroids are not pretty. They do not help some parts of the body without harming others. I just don't know anymore.
I am tired of the rain. I want prolonged sunshine. I want beauty and light. The darkness is getting old....
I will keep you updated on Sarah. For now, we will be spending the next 3-4 days (depending on when they start her steroids) at Akron Children's Hospital on the 6th floor.
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