As I sneak in to check on her I see my little girl asleep in her bed clutching her blankets. My exhausted sweet little one rests her body in the comfort of her home in her own room in her comfortable bed. This hospital stay has worn her out, and I feel a sadness creeping into my heart that I have not felt in a long time.
She came home from the hospital a little over an hour ago, and went immediately to her room and snuggled up on her bed. I found her there curled up in a ball with her eyes closed, not yet asleep, but not fully awake either. I quietly told her to rest body, and promised her that when she woke up we would go to get that hair cut she has been asking for for a while. She did not fight her body, and allowed it to take her to a dreamy land filled with hope and peace and comfort.
I watch her sleep and I wonder if she is dreaming about a life with no vision issues. I wonder if she is dreaming about what it is like to be happy and carefree. To only have to worry about the average 9 year old trials. I hope that her sleep is restoring her body and mind and that when she wakes up she will feel refreshed and renewed. She seems to have lost her will to fight this time around, and I know in my heart that if she loses her will to continue this battle with her body that I cannot fight it alone.
Dr. Locastro made it in to the hospital today. God love that man. He didn't have to come by as we have an appointment with him on Tuesday, but being the wonderful man he is he took time away from his own family to make a special trip up to the hospital just to see Sarah. After talking with her and going over some of his routine testing with her it appears that there is more damage in her right eye than her left. She cannot see at all out of her right eye. No vision what-so-ever. Her left eye is not fairing much better with her vision coming in at 20/800. Each day her vision is getting progressively worse, and I fear that this is taking a huge toll on Sarah's mental health.
She is so sad right now, and I find myself unable to help her more so than any other time. I am fearful that our family - that Sarah - is going to have to constantly live on high alert with no sense of normalcy ever to be found. Sarah has relapsed every month since January, and as each month goes on I find myself struggling to put the pieces of our family back together even more than the month before.
Josh has taken this relapse especially hard. He always does, but this time there is a new element of panic that is settling into our psyche as we all wonder if she is ever going to recover her vision. Nothing is working anymore - maybe it never really did. Not a higher dose of Imuran. Not repeated steroid exposure. Not plasmapheresis. Not IVIG. Nothing.
I am so sad today. It is an aching sadness that only those who have children that are sick can understand. It is the kind of sadness that resonates in the deepest parts of oneself. I feel defeated. I feel betrayed by life.
I have a little girl - a sleeping beauty - downstairs waiting for Life to kiss her on her lips and give her the happy ending she deserves. May she be granted this ending - as I can think of no better recipient.
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