Doing Research

     Doing research is part of my daily life, as I am a college student majoring in psychology. I also learned after my first child, that if you want to know the whole truth, you cannot always trust doctors or medical professionals to give it to you, so you have to find it on your own. I research many things on a very regular basis, so I am used to keeping an open mind about information I find. Regardless of how much research I am used to doing, or how detached from the information I am used to being, or how open minded about the information I have learned to become, nothing can prepare you for looking at your child's possible outcomes over and over again.
     I will not discourage other people from doing their research about medical problems with their children, but I will be honest when I say that it is not easy to digest, and even that is a wildly understated statement.
    One of the inevitable experiences of learning accurate information about your child's condition(s) is having to see morbidity rates, worst case scenarios, life-long impairments, struggles they will face, pain they will be in, etc. etc. etc. This terrible list of things you will see goes on and on and on. 
     You will also see inspiring and miraculous stories. You will see the best cast scenarios, and the miracle cases, and hear people's inspiring stories. It brings light to the situation, but at the same time, it is a reminder that you can have no expectations. To expect the worst, or to expect the best is setting yourself up for failure. With the complications my daughter has, she could either lead a perfectly normal life, her life could be ended before it barely begins, or she could be in a condition of one or more of the millions of possibilities in between. Joe and I have already accepted the fact that expectations are not things we can afford to have, and to us, the best case scenario is that she survives.
     So again, I will not discourage anyone else from doing research about a medical condition. But I will stress the necessity of not getting hung up on any of the results/stories that you find. Do not dwell on the worst case, do not dwell on the best case. Look at what you find as only possibilities, but not expectations. Prepare yourselves for any and all of the possibilities, but expect nothing. It is impossible to be detached, but remind yourself that every case is different. Even when the exact complications are present, every person and every case is different. Expect nothing.