Sarah is feeling better today. Her vision is still 20/100 in her right eye, but her left eye has improved from 20/200 to 20/100. She still has black spots and blurriness in both of her eyes but both symptoms have subsided since yesterday. I no longer look like a cyclops to her because the missing vision in the center of her left eye has returned. I am so glad I listened to my gut and did not have her admitted to the hospital yesterday (or the day before or the day before that...).
Things are not great, but they are better than yesterday - for that I am so very thankful. Despite Bob's and my reservations Sarah decided to play in her soccer game, and I am proud of her for doing so. I am proud of her for listening to herself, and not others (i.e. her parents), and for doing what she knew to be right in her heart. She certainly did not play well, and I knew she had trouble seeing the entire time she played, but to those who don't know what is going on inside her body she just looked like an unskilled soccer player. I'll take it.
Bob and I will be contacting a hospital in Buffalo, NY that specializes in pediatric demyelinating diseases such as MS and NMO, on Monday to find out what we have to do to get Sarah seen by their team of doctors. If that does not work out, we have beloved friends who live in the Boston area, and I know that there is a wonderful children's hospital there that also specializes in demyelinating diseases in the pediatric population. We could stay with those friends while attempting to get Sarah the care she so desperately needs.
Getting family thereapy has proven to be a bit harder than I thought. I have called two well respected facilities and neither can offer the kind of therapy we are looking for. One of them has offered to supply us with a list of doctors who may be able to assist us in learning some tools that will help us not only cope with this diseases effects, but also to thrive in spite of it. I plan on taking them up on their offer.
On another note, I think I am going to limit (or try to anyway) my posts about Sarah's health. I have these 3 other amazing children whom I hardly ever mention because I have allowed this disease to take up so much of my life. I also have an amazing daughter who is amazing for reasons that have nothing to do with her disease. I want to start sharing more of their lives - their successes and triumphs - because they deserve some of the spotlight as well. It is so easy to allow a disease such as Sarah's to swallow a family up whole without ever realizing it is happening. This doesn't mean that Sarah's illness is any less important to me. In fact, that is so very far from the truth, but what it does mean is that I need to start moving on with my life - with our lives. This disease is not going to go away. It is not going to disappear, and unfortunately I am never going to wake up and realize that this past year and the years to come were a bad dream. But I can stop allowing it to take the center stage of a very sacred space - my blog. In doing so I think that this will in turn allow me to move on in other area's of my life as well.
I will of course always keep you updated on any significant changes, any hospitalizations, or any pertinent news regarding Sarah's health. I just want to step back from the heaviness of all that this disease tends to bring. I want to show you all the wonderful things about my life. I want to tell you stories of beauty that surround these amazing souls that live in my heart day in and day out: Andy, Josh, Sarah, and Elizabeth. No sickness, no sadness, no grief. Just amazing stories about amazing kids, and the honest to goodness amazing life that I have been truly blessed to live.
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