Off Kilter

This NMO thing is throwing me off kilter. Just a bit ago I was on a new Facebook page that I joined full of people living with NMO. A newly diagnosed individual posted the question, "How long can I expect to live now that I have been diagnosed with NMO?". I almost threw up. Of course the responses varied, and there were plenty of people who have survived decades with this disease - some of whom were even diagnosed in their teens. But still the thought immediately came to mind: no one asks on the MS Facebook page what their survival rate is.

Sarah's neurologist at the Mellen Center called at the end of last week and moved her appointment up a month from March 3 to February 3. I hope she has good news.

I feel like I am holding my breath, and will be until I hear something definitively regarding Sarah's diagnosis. Sometimes I just want to scream out to God, and ask him why he is doing this to my family. I want to shout out to him that we are only so strong and cannot take much more. But then another part of me tells myself that I would just be wasting my breathe because God isn't real. If he was none of this would be happening to not only Sarah, but to everyone else in my family as well.

Josh is struggling with this disease. He has been having a hard time with Sarah's loss of vision (which by the way does not seem to be coming back even after 9 days on steroids). He is having nightmares about Sarah going blind. Her vision loss is affecting him deeply. It hurts me to see him hurting. He has become very protective of Sarah, and his kindness to her is amazing to see. The downside is that he is taking his anger and brotherly frustration out on Elizabeth. He and Andy have been sleeping in my room every night for the last several weeks. The girls will sometimes sleep on the floor too (although more often than not since their room is across the hall from our bedroom they just sleep in their own beds). I don't mind at all. I think being all together at night gives them comfort, and I will not take that away from them.  If I am being completely honest, having them near me at night makes me feel better too.

I love my children and Bob fiercely and with all of my heart. I would want to weather these storms with no one else. They are my world and my rock, and I know that I am their rock. Together we will get through this. One day at a time.