Wednesday, November 18, 2009

On closing the gap....

Of course, I would prefer that there be NO gap. That I were not, in fact, the mother of a child with special needs. A child that is covered in labels and orthodics and tumors and scars... Now, when I say that I wish I were not the mother of a special needs child, that in no way means that I wish I were not Remy's mother, rather, I wish Remy didn't have special needs. Remy's spirit, who he is, and and what he will be to world would be no different whether or not his brain was riddled with tumors and abnormal activity. I want to be clear on that.

Here we are though. And I must say, that life is beautiful. Today was Remy's IFSP (Individualized Family Service Plan) review. My little Rem-dog needed all new goals! His Cognition and his fine motor skills (based on the right side of his body) are in the 20-24 month range! This...from a boy who's prognosis was "moderate to severe mental retardation". Suck on that Tuberous Sclerosis! (And Infantile Spasms too!)