The Curvy Road

March 21  is the universal date of celebrating those born with the genetic disorder of Down syndrome.  I had grand expectations of the birth of my oldest child.  I had plans that were shattered.  At first, I thought it would be scary.  It was unknown territory and I was cast in the role of navigating it completely blind.    There were dark times where I wished he would die.   Yes, die.  Until you have walked through it, there is no possible way for you to understand.  The gasp that is uttered when I share that is understandable, but it clings to my reality.

He struggled with his health a lot.  In and out of the hospital with respiratory ailments and a very serious situation that resulted in surgery.     It was exhausting.   That doesn’t even cover all of the therapists that were on our team to assist with walking, eating, talking…..all of the basic living skills that we take for granted.

Then there were the miracles……his first steps, his first words, his ability to mend a marriage that was riddled by active alcoholism.     He provided the foundation for me to advocate for him.   To not settle for anything that was below what he needed and to push the envelope whenever I could.

Almost twenty-two years later, we have come a long way.  He is employed, happy, and an excellent contributor to society.   People gravitate to him.  He holds court wherever we go.   He is a supportive brother and friend.  He is human.  He can be a really large pain in the ass and grate on my last nerve.  He is stubborn (like his father) and tests my patience like nobody’s business.    I wouldn’t change his existence for the world.

Every morning he comes upstairs with his headphones on and feet moving to the beat of whatever song he is listening to.    He comes over to me to hug me and lays a kiss on my cheek.  That action erases all the struggles, the ignorant individuals,  and the obstacles that we have navigated.   He is my constant teacher.   Life wouldn’t be as bright without him in the world.

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