Making Deals with the Devil

As Sarah's condition maintains the status quo (at least as of yesterday - she is still sleeping, so I don't know what today looks like) I find myself wondering what kind of deals with the devil I will have to make over the course of her childhood and lifetime to keep her healthy and happy. A woman sought me out on Facebook, and invited me to join a closed group she created that is solely for those of us living the pediatric MS nightmare. Her message couldn't have come at a more perfect time. I was able to see pictures of those around the world who have children/teenagers living with MS.It was a blessing for Sarah to see happy smiling faces of others like her. She was particularly drawn to two beautiful girls - one her age, and one a teenager, and I knew she felt better seeing others who are struggling with this disease as well. After posting our story, and putting a little piece in there about how Sarah's neurologist at the Cleveland Clinic wanted to start her on Avonex and my desire to avoid drugs right now, I received a message from a woman whose child had a similar battle as Sarah's. She informed me that the only thing that stopped the relapses from happening over and over again was the inclusion of an Interferon drug into her daughter's life. I was grateful that the woman reached out to me, but so sad at the same time. I know that just because that worked for her daughter doesn't mean that this is what Sarah will need to do to stay (or even go) into remission because each case of MS is so unique, but I do know that if this is indeed the route we will need to eventually make then I will be making a deal with the devil. I will be doing so because in order to keep her eyesight I will be damaging another part of her body (most likely her liver). Drugs like Interferon's don't come without a price, and unfortunately liver issues are on the of costs of this one.  I don't know if I can live with that, but I also know that I have no choice. I am not ready yet to begin her on these drugs, and she isn't either, but I don't know how long I have to put it off.  Because of the nature of MS I will be making decisions like this one for the next 10 years of her life, and then she will be legally of age to begin making them on her own, and will continue to do so for the rest of her life (or until a cure is found).

Since Sarah's diagnosis I have tried to educate myself with as much information as I needed to know to help her get better, but I never really dove into the places that I did not need to go because I knew that I did not have the mental capacity to handle those destinations. Being on this Facebook group has forced me a bit to go there as I see stories of parents whose children have faced loss of bowels, muscle spasms, loss of speech, loss of memory, and the list goes on and on. This very well could be Sarah's story some day. I try so hard not to go there, but I think that I need to acquaint myself with those avenues of what this disease looks like because if Sarah's journey should take her down those roads and I am unprepared for them it will kill me.

So, I find myself making all sorts of deals telling the Universe that I will not try to expand my own family if it will allow her the ability to have her own children when the day comes and she is ready. That she is not wheelchair bound or have relapsed so much that making her have children becomes a near impossibility. Or asking the devil to please give me this disease too, so that she doesn't have to feel so alone in this world. That I will sell my soul in order for her to stop feeling like she doesn't want to have ever been born because this disease separates her from all of the other "normal" kids that she knows.

For a while, after her third stint in the hospital this summer, I was able to forget about MS for a while. I mean, it was always there still, but I was able to get it out of the forefront of my mind. I was able to pretend for a couple of weeks that all was well, and that everything was back to the way it was before her diagnosis. Soccer was beginning again and we were preparing for school - all regular things that we live year after year - normal things if you will.  When her symptoms deteriorated a bit a few days ago, my world came crumbling down because I realized that those moments of being normal were not real. That what is real is that everyday is like waking up in a nightmare. A nightmare in which the rest of the world moves on and on with their lives, and in which ours, and more importantly Sarah's, is altered forever. I would give anything to have back all of those pre-diagnosis years.

I wonder now if my whole life being Sarah's mother is going to be filled with robbing Paul to pay Peter. It breaks my heart into a million little pieces to think that this is the way that it is. I know that in time, I will figure this out, and that I will regain the fight of a lioness, but for right now I am just so very sad, and am ready to make any deal with the devil that I have to in order to help Sarah.