And So It Goes...The Unpredictable Nature of Sarah's Disease

Sarah is in the hospital again. She was admitted yesterday after the infusion center had no openings to be able to take her on such short notice. She will be there until tomorrow receiving a high dose of Methylprednisolone.

It happened so quickly. She went for a visit on Tuesday with her new neurologist at Akron Children's and by Tuesday night she could no longer see out of her right eye.

Her vision, Sarah told me, in her right eye is as bad as it was the day she was diagnosed with an autoimmune disease lat May. She cannot even read the 20/800 line - the big 'E' - that is at the top of eye charts. She has virtually no vision in that eye. Her left eye is holding steady at 20/100 with some blurriness in the left portion of her visual field.

I am not sad this time. Or mad. I am not dwelling on how difficult it can be to try and live a life with a hospital visit every month. Because it could be worse. It could be so much worse. So, we will take this not as a set back, but as a part of life. We will manage just fine, and all will be well. 3 days in the hospital is nothing. Especially when you know that you have the right caregivers in place to help your child - or at least try to help her.

I am not sure what is going to happen to her. It does bother me that she lost her vision so quickly this time and that she lost it so severely, but what can I do? I have been shown over and over again that I have no control over that, so I won't dwell on it. I will take care of her, and the rest of my family the only way that I know how - one day at a time. I will try and make a life for ourselves that is one to be both proud of and worth living. This is just an attempt to be a  stumbling block, but when you have been down this path so many times you begin to stop letting this type of thing trip you up.

We will still continue on our path of living a simple, uncomplicated summer whether that means a hospital stay or visit to the infusion center every month or not.

This life that we have before us is doable. It is not always easy, but it is definitely doable. So, I will continue to celebrate our life and be happy for all that we have right now. I will not let this get me down - because you know what? Someone else always has it worse. I am grateful for what I have.

p.s. - My picture uploader is working again! YEAH!