Another Relapse

Sarah is currently in the hospital after having another relapse while we were in NY this past week. We left NY early yesterday morning so that we could get her admitted to the hospital yesterday afternoon. She is beginning (another) round of steroids - 5 days total. She will receive her first 3 days of treatment in the hospital and then her last 2 days on an outpatient basis.

I am grateful that we are headed to Buffalo on Thursday night for our Friday morning appointment. I am hoping that one of the doctors that we will be meeting with to discuss Sarah's case will have some new information for us in terms of nailing down an actual diagnosis. I am also hoping that someone will have some news that will allow Sarah to have some reprieve from these constant relapses.

To say that I am heartbroken right now would be a complete understatement. I am having a really bad day especially after having taken the kids to see her this afternoon and hearing her tell me that her eyes are getting worse and not better.

I knew this was going to happen. I just kept pushing the gut feeling away that a relapse was imminent by telling myself that I was just being paranoid. I started to see the signs as soon as we got to NY, but Sarah kept telling me that she was fine. As the days progressed and the signs became even more evident that something was amiss I kept pushing the signs out of my mind because Sarah kept insisting that she was okay. Well, it turns out that she was not okay. In fact she was far from okay, but she didn't want to have to leave NY early and she didn't want to miss a friends birthday party today so she lied and told me that everything was fine. She was angry with me on Wednesday for having her dad notify her neurologist at Akron Children's that something was amiss, but in the end listening to my gut was the right choice. Her vision is terrible right now. Worse than it has been in a long, long time.  She cannot read, she cannot see more than 5 feet in front of her, and she cannot see the details of things closer. She confused her 12 year old brother (who was sitting down on the ground) with her 1 year old cousin. She is legally blind in both eyes right now and her vision is getting worse.

I am at a loss right now. I am angry and sad and tired. I don't care today that there are some who have it worse than me and that I should be grateful for what I have. I am not grateful for what I have today. I am jealous of all that I do not have. I am jealous that there are so many people out there with children who are healthy. I am jealous that there are mothers and fathers out there who do not know what it is like to know a wing full of nurses by name and who know your daughter by name. I am jealous of the parents who have never had their child try and find them in a room where there was no one else but them, but their child could not find them. I am jealous of those who do not know what it is like to have doctors tell them that their child is an outlier among outliers. I am jealous of those who have a name for their disease and an effective treatment plan.

I am most jealous though, of those who do now know what it is like to wake up almost every day and to wish that their reality was just a bad dream. Life is crushingly hard right now. The light that I was thought I glimpsed at the end of the tunnel was nothing but a dream. Instead I am left grasping for the dream that some day - one day - life will not be so hard for my family.