Brick Wall

So far, this has been one of the difficult days. Actually yesterday was a little rough too.  I think that just supports my theory that the good/neutral/bad days come in waves.

It's not that I'm ever really able to forget about the situation and the diagnosis, but it seems like some days it's buried a little deeper than others.  Some days, it's just more of a neutral background to our lives and not an all-consuming thought.  Other days, like today, it's raw and painful and infuriating.

Every once in a while, though not always with an apparent reason, I'll just have the thought "Oh my God.  This is really happening."  The best way I can describe it is that it feels like running full speed into a brick wall with my eyes closed.  It is in these moments that I can feel physical pain for the fact that my daughter is living inside me but that she is missing a vital part of her body. My chest feels like it is going to explode with the pain of knowing that she is not healthy and will never be healthy. My eyes overflow with tears when I have to stop and fully absorb the knowledge that she is going to die, probably within the next five months.  My heart aches when I acknowledge that we have done nothing to prepare our home for the arrival of a new baby; she probably won't see the inside of our house.

I hate when the reality hits me that we don't get to keep her.  We don't get to make all the normal plans that you are supposed to make for the arrival of your child.  We don't get to watch her grow up.   She will only be in our arms for a little while and that knowledge is almost unbearable some days. Today has been one of those.

I know that some of you are going to struggle to read this post.  The fact is: I struggle to write it.  It feels weak and indulgent, but walking this journey means that I can't just share the good days - that isn't fair to me or anyone else.  So some days, like today, I don't have anything positive to say.  I'm hurting and I'm angry.  And that's okay too.