Sunday, January 20, 2013


It's interesting to me that I actually wrote most of this post about a month ago when we were going through a run of particularly bad days...I had been waking up at all hours of the early morning and couldn't get myself back to sleep.  I put off editing and posting for a few days and by the time I got to it, that period had passed and things were looking a little better.  So I just left the post in draft form because I knew I would cycle back around and the feelings would once again be relevant.  And here we least I'm a little predictable, right? 

I have found myself wide awake at 4:30am several days this last week with such intense anxiety that there was no way I was getting back to sleep.  Not really much to do at 4:30 in the morning with your heart in your throat, no cable and two kids who are still sound asleep.  (Another downside is that by the time Chris gets home, I'm ready to go comatose on the couch!)

I haven't had any terribly upsetting dreams and there hasn't been anything specific that has changed recently.  We've been working this week to get funeral arrangements in place and even though that was difficult, it should be something of a relief to have it taken care of.  That is one of the most frustrating things about this - I can not manage to pinpoint exactly what is causing me to wake up in such a panic but I keep thinking that if, maybe I can figure it out I'll be able to talk myself out of it.

Unfortunately, I think that all of those normal little life stresses combine with the really big stress to become almost overwhelming.  I constantly feel like I am forgetting to do something or that there will be some terrible surprise bill in the mail that I forgot to account for.  Those of you who know me personally also know that I prefer to be a pretty organized person, but lately it feels like things are completely out of control.  And to some degree, they are...we didn't have any control over the baby's diagnosis.  We have since been able to take control of our decisions regarding her life, but still, those are in reaction to something that we had no part in.

I think that feeling of being powerless or helpless is part of what is going on right now (again, this is one of those things that I don't really think I realized until I sat down to write because this isn't really the direction I had planned to go with the original post).  We get so frustrated because this whole situation affects every aspect of our lives and we know that we will never be the same again.  We know that it will always affect the girls, because they will always have a sister that they won't really be able to remember.  We will all go on living and the pain will lessen, but we will always remember that we lost a child.  You can't go through that and not come out a different person; it's not possible.

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