Mourning Perfection…and Laughing

The 5 days between receiving the diagnosis and when we had to go back to the hospital for surgery were a little, well, blurry. It was hard to think, or to keep a thought for more than a few seconds. I’d start working on something, and inevitably after a few seconds my mind would wander:

  • Oh, we need to ask the nurse…
  • What if…
  • We need to make sure we bring…
  • What if…

At some point Kayleigh made the realization that one of the things that was causing us so much grief was that we were mourning the loss of our perfect baby. Only days earlier we would admire our chubby, cute, slightly big headed baby, and just bask in his perfection. He can do no wrong. He is perfect. Suddenly though, we were slapped in the face with the fact that even at 2 months old he’s just like everyone else. His body is…imperfect. He has a medical condition that is going to effect him for the rest of his life. He has lost this one moment of (perceived) perfection that most humans get to enjoy, even if they are completely unaware that they are enjoying it.

While this realization didn’t take away from the sadness that this mourning caused, it certainly made dealing with this situation a little easier. Being able to put words to a before unexplainable plaguing sadness was very helpful in giving us the ability to live with this sadness.

There is also, as there always has been and will be in my life, humor. Some people call it a coping mechanism, all I know is that for me, it works. Even during this time when we felt like we were marching in place waiting to get punched by a face tattooed Mike Tyson, keeping the mood light also kept me sane. Joking around about the size of Declan’s head, pretending Amelia was a pillow on the couch and then “crushing” her, these things helped quite a bit. One thing that sticks out over and over for us is something a good friend said to me in an email. It was something like, “Hopefully you’ll go to the Doctor, and they’ll find out that Declan just has a lot on his mind”. A line that will probably be with me forever, and now the tagline of this blog.

Posted on May 26, 2011, in Declan's Diagnosis and tagged , . Bookmark the permalink. 1 Comment.

  1. Yo Sister Foo

    In this family, a big head would hardly stand out. We’ll just make sure Heather’s holding him for all the pictures 😉


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