Monday, July 16, 2012

The Beast: A guest post

I'm a glass half-full, goal driven type of person. Being the mom of a child with a significant developmental disability has given me plenty of opportunities for re-framing. I can spin with the best of them. Yes my son Aidan is non-verbal, but he has the most communicative eyes and a contagious giggle.  Sure he needs to learn how to walk, so we have him up on his feet any chance we get. Of course there are many medical professionals in our life, and I expect to work as a team and I'll always come prepared with questions.
See, life is hard but it's also good.
With all of Aidan's challenges, there's been only one Beast I vehemently want demolished: his seizures.
When Aidan was born I was told that kids with neurological issues are at higher risk for seizures. I was too busy working for every ounce of progress he made to give that a second thought. Then the Beast struck, silently at first. Aidan's hand would curiously shoot up into the air for brief moments, his eyes would type-writer back and forth. It took us two years to diagnosis him because of these subtleties.
I researched, asked questions, requested several medical opinions and then the Beast moved in on me. He comes flying out of my mouth in angry colorful words when Aidan's head lurches forward banging the hard surface in front of him; He braids through my shoulders when Aidan's face turns beet red; He settles into my stomach when I read of the long, dangerous road we're on. The Beast rears its ugly head as he steals Aidan's independence little by little. It's hard to see any beauty in that.
I'm a goal driven person so I won't be defeated and I will fight this Beast with everything I have.
And I love what I have; I have a community of people who have already been down this road; I have a knowledgable medical team; I have a brain that loves learning; I have plenty of experience with unknowns in Aidan's world.
I'm a glass half-full person with good things on my side, but is it enough?
I think of the ways we've triumphed in Aidan's life - coping with his educational challenges, deciding on mobility issues, creating communities that would include him - and I think this Beast is one more thing to gain victory over.
Then Aidan cuts his hand open, or propels himself to the floor, or nearly takes his eye out on his thermos when the Beast bites, and I wonder.
I suppose this is the middle place where I'm destined to live - grateful in our victories, fearful of our defeats, but always mindful of the treasure that outshines the Beast that lives in my son. ____________________________________________________
When Heather is not involved in the myriad of tasks required in raising a child with a disability, she can be found with her hands on her piano, her nose in a book, or her fingers at her keyboard blogging at http://teamaidan.wordpress. com/ Heather and Aidan have also enjoyed presenting at universities to students who will become the professionals working in disability-related fields.

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