...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.

Monday, 24 August 2009

Development: Hers and Ours

Bailey had a six month neurodevelopmental appointment last week. Although we always long to hear good news the reality is that these appointments confirm what we already know in our heads but struggle to accept in our hearts.

Bailey continues to be on a developmental trajectory that will leave her severely and multiply impaired. In addition to an ongoing lack of head growth, she is beginning to exhibit many of the postural and tonal abnormalities that are typical for children with cerebral palsy. These patterns include increasing hypertonicity or tightness through her arms and legs and hypotonicity or low muscle tone in her trunk. She also is demonstrating clonus (a spasmodic alternation of contraction and relaxation of the muscles) that results in her ankles bouncing in a jerking motion. She is also "stuck" in many of the primitive reflex patterns that are typical for infants but then must become integrated to allow development of consciously controlled movement. As a result she continues to be unable to perform purposeful motor movements. She also continues to be unable to smile or verbally interact in an intentional way. The development of additional saliva as she begins to cut teeth has resulting in increasing difficulty for Bailey in managing her secretions. She often gags and chokes on the saliva and we have begun to use a suction machine to assist her with clearing her airway when needed.

Some of the positive developments include the addition of a new medication that along with the use of a feeding pump significantly improves her comfort with feedings. This also has helped her with sleeping and even occasionally napping during the day. Overall, in the past two weeks for the first time, she has had more comfortable days than days when she was in pain. This has been a tremendous blessing.

I personally often (certainly not always) feel a deep sense of peace in this time. In part this is because the tyranny of the immediate prevents too much deep reflection. But even more than that, it is the acute and daily reminder that this situation is so clearly beyond us. There is no illusion that we can control this situation. It just is. As a result it is easier to live in the present moment without fear of the future. Thank you all for your ongoing care and concern.
The Mekkes