Guilt and Fault

I have been avoiding coming here, writing here, because I am afraid to say too much, share too much about how I am feeling right now.  Blogging has always been a good outlet, a place to put it all down, but I never dealt with the strength of emotions that I have right now, and I have been unsure of how to process it all.

I am terrified.  I am terrified for what is to come and what it will mean for our family.  I don't know if I can do a lifetime of waiting for the bad to happen.  I don't know if I can deal with waiting for my baby's lungs to fail, and then have to wait and hope for new lungs for him.  How do you do that?  How do you wait and hope for something that has to come at the expense of another?  How do you prepare for a future that may hold that kind of distorted hope?  I don't have patience, I need to do something, try something, fix something, but this situation I can't.  If we get the best case scenario for Finn we will still need to wait to see when his heart needs to be repaired, wait to see if he gets emphysema, wait to see if any other organs have issues or fail.  It is terrifying.  I have researched, read, reviewed every article I can on the disorder they think he has, the positive and negative of access to a university library system.  It is never good news.  The incidence of this disorder is so low that there is minimal data which means we have no idea what will happen long term.  Terrifying.

Then there is the guilt.  The guilt sneaks up on me in my long rides to and from PT school.  All that time in the car thinking about this sweet little boy of mine and what the future holds leads me straight to guilt. Why my Finny?  I cried when I found out I was pregnant with him, is that why?  Teagan was only 9 months old, I had just been told I had to rewrite part of my comp exams for my doctorate and I cried.  I was trying to find my footing as a mom of four and then five was coming.  I was scared, and worried and so cried and wished the test wasn't positive.  I was selfish and didn't want to be pregnant again so soon, lose my body for 9 more long months and then face another year of nursing.  I cried then, and now I cry for the guilt I feel for ever thinking that our lives did not need Finn, that he is not exactly what we all needed.  I think, on those long rides, was it because I was not happy he was coming?  Am I being punished for that? Am I being punished for choices I made years ago? Why my Finn, why is he going to have to deal with this if I was wrong?  He is an innocent happy baby, why is he paying for my actions?  Oh how the guilt comes in and takes over on those rides, the tears come while I am alone and no one can see and when I pull in the driveway it takes all I have to push through the door to face this life that is terrifying me right now, but I do.

Change for us is coming.  We are standing on the line right now as a family, hands held tight, one force ready to take this on.  We will change our entire universe for this boy, we will move, quit jobs, do everything we can to help him.  When that phone rings and we get results, it will be a new life for all of us, a new reality and focus.  When we find out, guilt will need to be banished so we can gather our strength as a family and fight for our boy.