A diagnosis

Yesterdays MRI had the desired effect of providing more information about Emma's physical state. In fact they have diagnosed her with a rare genetic condition called Moebius syndrome: http://www.ninds.nih.gov/disorders/mobius/mobius.htm

Mobius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression.

The potential impact of the condition is varied and at the moment is simply unknown. You probably have many questions, but boy do we have many more!! Trouble is the doctors can't answer them yet.

We should meet with the genetic specialists on Sunday or Monday and will hopefully find out more, however as many of the symptoms are only obvious in older infants it seems like we will be playing a waiting game with this.

Moebius explains many if not all of Emma's abnormal features, and we are hoping that this will be the extent of her condition - how many more rare conditions can a family take!!

As for Scott and I, it's certainly an emotional strain. You want to ask "why us?" or even "what next?" but we know that the answers will only become clear in time. (I do keep the Book of Job from the Bible in my mind!)

Our decision is that we will accept the news, and love our daughter, with a grateful and joyful heart. We know God will provide our strength and resources and that He will be glorified through this. ( I think that is a big part of faith - being able to receive trials in the knowledge that it will glorify God).

There is an alternative option, which is to feel despair, anger and frustration. This benefits nobody, least of all us! We don't want to be negative and still have to face an uncertain future! How much harder will that be!!

Finally, the toughest part of this is knowing that Emma is different, and people can be cruel. We want to protect her from the intolerance and ignorance that she will face (what parent doesn't), and that is the part that makes you want to cry.

In all this we cling tightly to the knowledge that we love and serve a healing God who can (and does) work miracles!

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."

Having said this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes. "Go," he told him, "wash in the Pool of Siloam" (this word means Sent). So the man went and washed, and came home seeing.

John 9:1-7