...bailey's story...

Our story is a story about a MIRACLE. It is not the kind of miracle that is so often shared in Christian circles. We have heard stories about untreatable cancer that disappeared and of a child that was never supposed to walk or talk and is now a healthy adult. These are often the kinds of stories people share with you when you are experiencing difficult circumstances. Stories about the TRAGEDY that was avoided or the near miss that is now in the rear view mirror of life. We value these types of stories and we CELEBRATE them!

Ours was not that kind of story. Our daughter Bailey Hope was born on February 20, 2009. She died on August 13, 2010. The eighteen months in between were horrible and heart wrenching as we experienced our worst fears coming true. We were not rescued FROM heartache and tragedy.

Our miracle was that we were joined IN this journey by friends and family that gave of themselves and by our GOD who held us in unexplainable ways. This is our story. We do not share it to garner pity. There are others who have similar stories. There are so many others who have more tragic stories.

We share our story because it is impossible to talk about our beautiful daughter, without talking about our beautiful God. We must talk about our daughter. We must talk about our God. It is the MIRACLE behind the MIRACLE.

Friday, 29 January 2010

Almost One.

The girls are almost one! As it always does, it seems like both an eternity and an instant since they were born. Alexis continues to be a smiley and happy baby. She is crawling, crusing, and has a vocabulary consisting of one very important word, "Dada." Yes mothers I know its unfair. There is just something about the bond between a father and a daughter or.... maybe its just easier to say.

Bailey has had both an EEG and an MRI in the past few weeks. The EEG was the result of her seizures increasing in both frequency and duration. We continue to try new medications in an attempt to find the right balance to control her epilepsy without resulting in other adverse side effects.

The MRI was completed as she approaches one year of age to allow a comparison of the images with the initial images that were taken shortly after birth. Unfortunately the MRI did not offer any signs of positive development. So we continue to live life and love our brave and strong little Bailey AKA Bo (Alexis is Lu). We pray and long for her to be comfortable and at peace.