I cry less, worry less and stress less. I am getting comfortable, again. The problem with this is that we are not yet at a diagnosis. We’ve tossed around when enough is enough and when we should just say “no more” to the testing. The waiting and uncertainty are agonizing. How important is a diagnosis for a disease that has no treatment and no cure? We are doing therapy and she is moving forward in her development. Can’t we just keep doing what were doing and let it be? The more I think about it the more I realize that it is extremely important. Having the confirmation of yes, a mitochondrial disease or yes, cerebral palsy is the first step on moving on mentally and emotionally. Moving forward without looking back and asking ourselves “does she really? “what if?” “are they sure?”. Being able to switch “suspected” to “has” will calm the part of our mind that keeps us up and searching google for hours and hours. That is the selfish part of the reason to keep up the search. The other part that I believe is beneficial to Cara, is getting an idea of what we can expect. Is she more likely to develop problems with her breathing, her heart, her kidneys, more neurological issues? We can get the right doctors on board and be aware and ready before any potential problems arise.
I had a dream two nights ago that keeps playing over and over in my mind. There is a small room in a giant warehouse type building. This small room is wall to wall on fire. In the middle of the room is a big pile of wood also in flames. I am standing at the door to this room facing outward. Behind me is the fire and in front of me is many people whose faces I can’t make out and in the front and center is Dan holding Cara. They are just looking at me. I stare at Cara for a long time then close my eyes and jump backward onto the pile of wood in flames and burn to death. It actually hurt and I died in my dream. I cannot figure out why I had that dream and why it keeps haunting me. It is not the thought that I would die for Cara. Like any mother, I would not think twice about giving my life for either one of my daughters. There is not even a choice. It’s a fact. I am starting to think it has more to do with this struggle of finally getting to a diagnosis. I am not sure what the link is though. Perhaps it is just a dream that wont go away.
Cara has another MRI in a few weeks. I am extremely nervous to hear the results. When I think about it I get cold and my palms sweat. What does it mean if there is a change or more damage? Is a change always negative? If there is more damage what does that mean for Cara’s future? Part of this fear is because of the discovery of new abnormal activity on the right side of her brain. The fact that her neurologist wants another MRI because of this new activity means that she is suspecting a change. Not a good change. The rest of the fear is that if there is more damage then it means this is not a static injury and there is probably nothing we can do to prevent further deterioration. She is only 1 years-old and her brain is already damaged enough that she can’t talk, can’t walk, struggles with hand-eye coordination, can’t steady her head, can’t sit-up on her own, eats through a tube… What will she be like in another year? What will another year of deterioration mean? All questions that are probably not healthy to think about because no one knows. We don’t even know yet if there is a change at all and hopefully I wont even need to ask the questions. As hard as it is, I still need to think about the possible answers.
Something that I have discovered about myself is that I have to feel prepared. I always have to feel prepared for everything and especially for getting bad news. I need to sit in the worst case scenarios and accept the negativity before I can think positive. I have to go into the fight ready to be hit square in the face and have a recovery plan before I can consider winning. I have to go into a doctor’s office ready to hear heart wrenching news and be able to walk myself out and drive home before I can play with the thoughts of joyful news. I am not a negative person. I am a person that is scared of being blind-sided. Scared that if I am not prepared for the hit to the face then I will never be able to recover from the knock out. I have two little girls and a husband relying on me to continue being a mother and wife. I can’t risk not getting back up.
I find myself feeling more comfortable and getting use to not knowing and it scares me. We’ve been through this before. We were comfortable and recovering from Cara having a brain injury and being “special needs” and bam! we were hit in the face with a suspected disease that can likely take her life. I can’t get comfortable because I don’t think I can take another hit. I can’t afford to not keep going, I can’t even afford to fall down. I can’t afford to be comfortable until we know. We know, then we can all move forward.