It's Been a While!!!

  I guess I didn't realize how long it has been since my last update!  As I think I mentioned in my last update, writing a blog and reliving all the memories (both good and bad) that I have placed in the back of my mind is more difficult than I ever thought it would be......
  Now that Lily was finally able to come home at one month old we had the pleasure of spending good "quality" time with our daughter doing all of the "normal" things that parents of heart-healthy kids take for granted and often dislike including:  waking up for all feedings, changing diapers, washing bottles, and holding our baby girl.  Yes, that's right.....I said holding our baby girl.  I never realized how much I enjoyed snuggling with her, smelling her hair, and being able to snuggle up to her without all those wires, IVs, feeding tubes and monitors.  There was no beeping, no 6:00 AM blood draws, no trash bag changes at 12:00 midnight (yes...you heard it right!)  It was just us, and our baby, and it was PURE HEAVEN!
  It also meant that all of our family and friends who had cautiously "avoided" Lily due to complicated scheduling, illnesses, and/or fear, were now asking "When can we see the baby?"  I sort of explain my mindset at this time as that of a mother lion protecting her cub.  And, I mean this with no malice but I wanted no one to come near her, much less touch or hold her!  It was flu season (I am  public health professional), and my infant daughter had just come through arguably one of the most complex surgical procedures known.  And mind you her road was never smooth sailing!! 
  I must preface my next statement with the fact that we are lucky to have supportive family and friends backing us up at all times.  However, hearing the question:  "Is the baby all better now?" really starts to wear of you after a while.  This question is one I have struggled with over the past years, and one with which I have finally learned to make peace after much soul searching.  No matter how much I explain the surgeries and Lily's diagnosis of HLHS to others, she will NEVER be "all better."  Her plumbing is now able to function in a way that allows her to survive and live a meaningful existence, but she will NEVER be "all better".  
  As a society, and one in the year 2011, we tend to think that there is a procedure or magic pill that will cure all maladies.  If you have a problem, it can be fixed...... I call it the "Take 2 and See Me Next Week" syndrome.  It takes a lot as a new parent, and a new parent of a child with a complex congenital heart defect to finally realize that there is no cure, and there is absolutely nothing in the entire world that you can do to change it and make your child "perfect" again.  It hurts a hell of a lot to think it, even worse to say it, but the worst to feel it in your heart and live it each day.