An Update on Sarah

**Update: Sarah is still home today. Her eyes are still bad, but are manageable. We are going to take things on a day by day basis. Sarah feels certain that she will inevitably end up in the hospital one of these days because her symptoms are the same as they always have been prior to hospitalization - blurry vision & black dots in both eyes. We did her school work today (she wanted to make sure that I would bring her school work to the hospital because she does not want to get behind. I am so, so, so, glad that I chose to home school her this year. I could not imagine having to go through all of this while she was in mainstream school.), and she has been relaxing by playing with her sister and brothers. Family has been notified of the situation and as always they are on stand by should we need them in the next couple of days.

Thank you to everyone for reaching out to us. I appreciate your thoughts and love. I will keep you all posted.**

My heart hurts in a way that is indescribable. Sarah is not doing well again. I should have seen the signs when they were happening, but I dismissed them all with silly explanations to myself as to why this was something other than a relapse.

Three nights ago, Sarah was crying in bed. When I asked her what was wrong she talked about how she did not want to go back to the hospital. She said that she wished that she did not have MS. I didn't think too much about it other than her needing to vent, but in the back of my mind I did think that it was odd that she would bring up such topics since I thought she was doing so much better. The hospital was very far from my mind at this point in our lives.. So, I sat and listened to her talk and rubbed her back. Eventually she fell asleep. Monday morning I woke her up at 8 am to begin her school work, and she did not look right. Her eyes were a little bit glazed over, and she had that stare that she gets when she cannot see. But I knew that she was tired, and we have discovered that when she is tired her vision does get more blurry, but then corrects itself over the course of several hours or a day. When she sat down to do her lesson with me she put her head down on the table, and started sobbing because she couldn't see what she was doing. I had her lay her head down for a bit, and she told me that she felt better after a while. We completed her lessons, and the day continued on as normal. Two nights ago, she did the same thing. This time though, she told me that she wished that she had never been born because she hates having MS so much, and she is afraid all of the time that she is going to lose vision in her eyes. Again, I rubbed her back and listened to her talk. I should have picked up the fact that something was amiss because she was talking about MS so much again, but I didn't. Like a fool, I pushed aside the icky feeling in my belly that something was not right. I asked Sarah over the course of the day how she felt. She always told me that she felt better, not 100%, but better. (And by 100% - I mean her new 100%. We are fairly certain she will never have the vision she once did.) After soccer practice last night she came home and complained that her eyes were really bothering her. I attributed it to her having a coach that likes to make the girls run a lot, and the fact that it was hot out. I had her take a shower, and we hung out in her room which has air conditioning. As I was putting her to bed last night, she started to cry once again, but this time she confessed that she has been keeping her vision problems from Bob and I for the last few days because she did not want us to take her to the hospital. She said that her vision is starting to go bad like it did all of the other times when she was hospitalized. She said that it was getting bad enough that it was starting to scare her, but she felt torn. She did not want to lose her vision, but she also did not want to go back on the steroids because then she could not play soccer or do other normal kid things while on them. She was sad because she does not want to go to the hospital for 5 days again. She wants to be home with her family. She wants to be able to sleep in her bed every night. So, Bob came home from work early last night, so that we could formulate a game plan with Sarah. We decided to not take her to the hospital last night, but rather to wait and see how she feels today. I know that heat, stress, and being tired are all triggers of MS symptoms and usually those go away on their own over the course of several hours or a day. She has had issues like this in the past on and off, and her vision does indeed get better. Maybe, just maybe, she is having such trouble because the weather turned hot here in this part of Ohio, she just started soccer a couple of weeks ago, and she is getting back into the school routine. Honestly, though, I am not counting on it. This disease has not been kind to her - why would it start to be now?  She took her last steroid treatment on July 27th. If this is a true relapse (and I am sorry to say that I think it is) then her symptoms came back on August 25th.  The God forsaken disease could not give her a damn month of peace.

 The rage inside me is simmering. The fury of this is incredible. The anger is bubbling up from my toes, past my stomach, and into my throat where it is just sitting waiting patiently to come out. I can feel it there biding its time. Waiting for the perfect moment to seep out of me.

I am worried now because we have been told repeatedly by doctors that the first two years from the time of the initial onset of MS are critical in determining which type of MS she has, and how severe it will be. We have been repeatedly told that because Sarah is a child she will fare much better than an adult with MS over the next 15 - 20 years - that she should be able to go years and years without a flare up.I repeatedly wanted to throw up in my mouth at these statements because that has not been our case, and I want to yell at the doctors that Sarah is not everyone! She is a unique human being unto herself, and I am tired of hearing generalities. I want someone to tell me about her story and her disease. But no one can because no one knows her story yet, and they know very little about her disease in the scope of things. I hope that there is as much research going on to find the CURE as there is in coming up with new treatments. I also hope that pharmaceutical companies aren't going to use their power to delay finding a cure, so that more and more people will need to rely on their medicine. I don't hear much about what scientists are doing to find a cure, but I do hear about the latest medicine coming down the pike to help deal with the symptoms. FIND A CURE!!!!!!

I believe that our family was given this life because we can handle it together. Because we are strong. Doesn't the Universe realize that even the strong have breaking points!!!??? That even the strong feel weak when pushed, and pushed, and pushed??? I do not know how much more of this that I can take. Life was getting back to normal. Sarah is playing soccer. Girl Scouts should be beginning soon. She really wants to dance at my sister's studio (I know that I am completely breaking my 1 thing a season rule.) She was going on play dates with friends, and having fun again. She was feeling better, and losing her steroid weight which bothered her so much.

I will keep you updated as I can. I think it is safe to assume that if you don't hear from me for a couple of days it is because we are at the hospital. (Akron Children's is Sarah's first pick).