The tantrums and compulsive behavior and name calling.
The beautiful white iris pattern of his baby blues.
The way he stares off into space, the windows are open, and he's memorized by the sound of a commercial mower.
The mower turns off and a weed eater begins. He looks at me with a satisfied smile and says, "That's a different sound."
The way his mouth is always gaping open...revealing his wide spaced teeth.
The way he looks at me, tears running down my cheeks, and says, "Why are you crying again? Be happy!" He smiles, and I can't help but smile also.
And, as all those things come together and hit my consciousness in one quick moment, I grieve the loss again. The hurt is deep. The fear is crippling as I think about "what's best." As the whole world is moving on with life, and us, well, we're stuck. I'm stuck. Never moving forward. Trapped in the day to day, not knowing what may happen tomorrow, because what was best today may not be for tomorrow. Never able to have a plan because each day brings another challenge...one that could be permanent, or not. I'm taken back to delivery day, when they handed him to me and I could't hold him, even though I didn't know what was wrong, I knew something was wrong, and it pained me to hold him. I'm taken back to the day the doctor called and confirmed at 11 months of age, our son has Williams syndrome. The hurt was deep then too. I never knew one could hurt over a loss that was still present, so profoundly. I know now.
Yet, all of this hits like a storm cloud with no warning...quick, overwhelming, and all consuming...and all I know to do is hold him tight, tell him that I love him, but that Jesus loves him more.
#williamssyndromeawareness
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