When She Cries

Bob woke Sarah this morning for an appointment with Dr. Locastro, and she struggled to get up. Her body was failing her, and her will was almost not strong enough to remove herself from her bed. With tears streaming down her face, she came to me, and said, "Mama, I am tired. I am so tired. I cannot do this.". My mother warned me that the changing of seasons would wreak havoc on her body, and I forgot to heed her words. Sarah's body isn't tired like yours or mine might be after too little sleep. Sarah's body is utterly exhausted - an exhaustion that you and I will most likely never know. Each movement she makes feels like she is carrying a 1000 lbs on her small body. Her neck is aching her terribly and her ribs and legs have been hurting her too.

It is days like this, when even though the ever missing sun is shining so brightly, I feel like there is a dark cloud hovering over my heart blocking out the light. I cannot help but feel a deep sadness and unfettered anger. Children are not supposed to hurt like this. Children are not supposed to know what it is like to have their bodies fail them. Children do not deserve diseases. Young children especially - who have no understanding that sometimes really bad things happen to really good people - who do not know that there is nothing that they did wrong to deserve a disease.

Photo courtesy of: luckytolovelyla.blogspot.com

When she cries it breaks my heart into a million different pieces. When she cries, it is not the cry of a child facing a child's issue. It is the cry of a child trying to face an adult issue that is wreaking havoc on her body. Her cries hurt me in the deepest parts of my being because I know that there is so little I can do to make her feel better, and there is nothing that I can do to make this disease go away. As a mother, I am supposed to have a magical "make it feel better" touch. This f$%^ing disease lessens my magic because its power is so real and sometimes so dark.

Some days, like today, when I am seething with anger at what this disease is doing to my daughter's body and mind, I am ready to go to war with it. I have my battle gear on, and will fight this b%^ch with every part of my being until the day I die. Other days, when I am in a more rational mind frame, I know that I cannot beat this disease by going to war with it. I can only beat it by taking each of its punches, and making the best of them. Only by being positive and in a good mind frame am I going to be able "win".  Unfortunately, after this mornings episode with Sarah, I am not in a rational frame of mind. I have my battle gear on, and I am going to take this thing on mano a mano. I will not fight fair. I will fight as dirty as I need to to tackle this a$$%)^& and beat the crap out of it. NMO has picked the wrong mama bear to screw with. That is a fact.

photo courtesy of: ellenpoems.blogspot.com