One year....

We have hit a major milestone...it has officially been one year since Keyan has been inpatient for an illness.  She has had numerous ER visits, several of which have been extremely frightening,but we have convinced the doctors to set us free every time.  We are all very happy to have met this marker on our journey.  It is only by a miracle that this has occurred.  We also have the doctors at Cincinnati to thank, as well as our nurses here at home.  A year ago, we really decided to up the ante on what we would take care of at home.  We have raised the bar for our nurses and doctors and they have met us there.  Basically, if we CAN do it at home, we do.  So that means that our nurses have had to take on more responsibility and be prepared to run a pediatric intensive care unit here in our living room.  Before our girls came along, I had no idea that families lived like this.  I had no idea that non-medically trained parents make life changing decisions for their kiddos. 

The decisions have been hard, but I know that we have made the right ones.  There have been a few occasions where I have looked at Paul and said, "Am I being stubborn?  Does she need to go in?"  We have been able to take a deep breath, take another view on the situation and keep her home.  We are so pleased with the trust that we have been given by the medical people in our life.  This is not easy.  Taking care of Keyan calls for each of us to rise above our comfort levels, step out of our sense of normal, do things that we don't really want to do, face our inner ugliness, and embrace the highs and lows that God and Keyan bring our way.  We can only do this with the support of friends and family.  She is only able to stay home because of the lovely piece of plastic the runs IV nutrition into her little body.  It is such a love/hate relationship with her central line, but for tonight, we celebrate the quality of life that it gives her and look forward to many more months admission free!

Why the picture?  Because to me, it symbolizes what having her home means...togetherness.  There is not one of us that isn't grateful to just be together as a family.  Something so simple, something that many take for granted.  Once we  experienced separation that is out of our control, we choose to embrace our time together with a whole new sense of appreciation. Tonight, I am thankful for the insight this journey has given me.  I am thankful for what I have learned and I hope that I can continue to be thankful despite the road ahead.