Saturday, April 7, 2012

Double Edged Sword

We are finding that Matthew being one of two in the world known with his particular chromosome disorder is a double edged sword.  We know pretty much nothing about the other person with his disorder. And we only vaguely know about others with duplications on the same chromosome as his. And what we do know about those with other 4q duplications is that there is a wide range of abilities and manifestations of the duplication.  Some walk, others are in wheelchairs, some talk, and others don't. 

No one knows what to expect from Matthew--his prognosis, his disorder, his ability, his growth curve, or really anything about him.  Every so often, I wish he had a more recognizable and known disorder-- like Down Syndrome.  There are even developmental charts and growth curves for children with Down Syndrome.  There is no chart or curve that gives us any indication about what to expect for Matthew.  

Until Matthew does something, we don't really know if he ever will-- like talking.  Do we know if Matthew will one day talk?  No, not really.  No one can tell us he will.  (Hence, why I worry.)

But the other side of not knowing is that no one can say he won't.  Did we know if Matthew would walk?  No, we didn't, but he did walk!  

Navigating Matthew's journey has been like stepping into the darkness and hoping the floor is still there.  We don't know what to expect, but we'll take it one step at a time, letting him lead us where he may, and pray for the best.

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