The Face of MS

I received my 2013 Rider Handbook for Pedal to the Point today in the mail. After I put the kids to bed I sat down to read it, and I cried. I cried because this disease is real and is in my life. I cried because no matter what I do there is nothing I can do to take this disease away from my daughter, and to make it my own. I cried because this disease is hurting her legs now too. It is not just her vision that is affected  anymore. There are other signs of this disease that are making its way into her life. I cried because there is absolutely nothing worse in the world than to not be able to save and protect your child. To know the devestating potential a disease can have, but to have no line of defense other than just waiting to see how it plays out in her life. To see her deal with an incurable disease day in and day out when the rest of the world lives as if nothing is wrong.

As I read the packet I could feel the rage boiling inside again. I thought I had dealt with it and it had moved on to someone else, but indeed it did not. Like a volcano it just sat dormant inside of the deepest parts of my being waiting quietly for the perfect moment when it can spew out of me again and leave its scars along the path of my life.

If you ask me, I will smile and tell you that Sarah is doing okay. That although she cannot see 100% out of her left eye yet that she has come a long way. But what I want to tell you is that I am so scared because in 2 days she will be coming off of her steroid treatment, and the last time she came off of it she lasted 4 days and the symptoms came back full force. I want to tell you that this is so scary to me because it takes the steroids 3 days to fully leave her body . This in turn means that her body was steroid free for 1 day after her first bout with MS, and the symptoms came back. 1 day is all this disease gave her to feel normal, and it wasn't even 100% at that because her left eye was still giving her trouble. So, I find myself lying awake at night counting down the days until she is done with this drug treatment.  I know with each passing day I will be holding my breath hoping and dreaming that this beast goes into remission, and stays there for the rest of her life. I want to tell you that Sarah is self conscience about her weight gain, and that she cannot wait to be back to her old self again. I want to tell you that this kills me inside a little bit each time she mentions her round face and belly.  Her concerns about her body make me want to reach into the deepest parts of her body, and rip this disease from her, throw it on the floor, and stomp on it because HOW DARE this disease make my 8 year old daughter self conscience of her beautiful self?!!! I want to tell you all of these things, but I wont. Instead I nod and tell you that she is getting better, and that we are fine. Except that sometimes I/we are not....

I wanted to show you the face of MS because I am tired of seeing only adults in literature. I am tired of children being a little blurb of a comment on the information packet. I am even more tired of preadolescent children not even being mentioned in some of the information I am reading because to me, my daugther is worth more than 1 sentence or no sentences at all! My daugther is worth a whole booklet on just her. I want to see her face plastered in every MS booklet there is out there, and I want a scientist to see that face, and I want her to be so inspired by my girl that she works day and night to find a cure.

I want my daugther to stop hurting. I want my family to stop hurting. I want to stop hurting.