Some days but not today

Some days…

Some days Its ok. Some days I can think positive. I can see the light in a childs disease. I can see her fight, her innocence in thinking 20 pills a day is normal. I can work hours of breathing treatments and airway clearances into our schedule like ballet class or nap time. I can ignore when she coughs and when she tells someone with her sweet little voice  in passing she has a cold and I can smile and keep going with out having the urge to tell them it isn’t really a cold, that to call it that would be like calling cancer a bug or aids the flu. Some days I can hold my breath while she coughs and then ask her questions like what would you like for lunch? or what did you do today? I can act like it doesn’t pull at my heart, like I’m not every-single-time saying a prayer in my head fighting to keep my legs straight and not bow down on my knees right then and there. Some days I can talk of a cure and tell people about the enormous strides we’ve made in science and how some children are living into their 30’s, 40’s and beyond. I can say this and skip around the thought of the ones who don’t. I can tell about her blood work and x-rays, about how at 4 years old she already has inflammation and irreversible lung damage with out picturing them, her tiny lungs. Without watching her breathe in and out and wondering each time if she’s breathing in a new bacteria, a new illness that will cause more little foggy marks in radiographs that should not have to be taken of a child this small. I can talk with a grin of the other things that fill our lives and how a disease will not stop us doing these things that we love. 

And somedays I can’t.

Today I can’t. Today telling our story and reading others makes me ache to the bone and causes tears that overflow and just will not stop. I think about every time I read the words ‘he’s doing good’ and how they’re followed by a ‘for now’ and every time I hear a  “we’re lucky” it’s followed by a list of things that haven’t happened ‘yet’ and how only one or two hospital stays a year is considered a healthy cystic fibrosis child. I think about how this effects us, where we’ll fit into this picture. I think about how healthy my child looks, thick glossy blonde hair, gleaming blue eyes, rosy ness in her cheeks and not a sign to strangers that her body is fighting with everything it’s got.  I think about how funny it is that in one breath I can know with all of my being that someday she’ll be in pain and I won’t be able to stop it and in the next breath I can feel bad about asking for donations. Worried Ill make someone feel uncomfortable or be too pushy. I think about the guilt this causes as a mother and the confusion it causes as a person. Today I don’t care. Today I cry, my body heaving and my head aching with never ending relentless thoughts. Today I want a cure so bad I can feel it in my pulse. Each muscle straining with the weight of it, each nerve tingling and my head fuzzy with the energy I put into willing God for it. Today I wonder if her cracked nails are the beginning of clubbed fingers and toes. I wonder if she’ll be allergic to the antibiotic I have to put her on tomorrow like the three previous ones we’ve tried and if so, how will she do with her first I.V. I picture needles in her veins where scars will be later. I picture bruises on arms small enough to wrap my thumb and first finger around. Today I wonder how I will stay strong. Today all politeness is gone. I’m angry at those who will not donate five dollars; those who watch me, listen to me and do not ask more questions. I want emotion, reaction out of everyone. I want to be selfish and sink into my own pain. I want to know that it’s ok for a mother to have grief. I want to make each and every person I know realize that children are dyeing of this. My child could die of this, probably will die of this. Today it is not ok that there is not a cure. Today it is not ok that every person I know, that knows my daughter is not fighting for a cure with all of there hearts.

Tomorrow it will be ok. I will understand. I will know that when someone has a thought of this, tries to imagine it, even has an emotion for it, it will be gone by the time they think of their next meal. It will be no more real or urgent to them as some ones kid who is sick. And I’ll be ok. I will recognize the formalities of life and its ties to mans experience. I’ll know that what we don’t see or touch in our own lives cannot be ingrained in us. That when it is not our child gasping for air and coughing until they vomit we cannot understand. It is not our fight. And I will be thankful for those who do brave into our world. I will identify the immense selflessness it takes to walk into such pain and be a light. To take someone’s grief and make it your own. To donate and walk and educate when it is not your child. To willingly glimpse a reality that is not yours.
  Today is today, not tomorrow or some days but today. And today I cannot understand your happiness, your guiltless existence, your ignorance, your reality…only my pain.