Its been a month since the surgery to remove the tumor on my sweet son's brain stem.
He's had some pretty intense side effects from this surgery, mainly the loss of the ability to swallow. He also has continued problems with his autonomic nervous system. He still has difficulty standing without feeling like he will pass out. Steven has learned to deal with it without actually fainting, but it is frustrating and limiting. He also has issues with his body temperature, his pupils dilating, and other odd autonomic nervous system functions. It is at times overwhelming and often heartbreaking.
But it's always appreciated and forever humbling to know that he survived such an intense surgery and he will soon again gain control over this ravishing disease.
He truly is our hero.
The VHL community are heros to us also. Friends that we've never met messaged me constantly with reassuring words during some of the darkest hours I've ever known. The love and support from our friends in the VHL community continues. They know and understand like no one else can.
This is without a doubt a daunting experience.
We are hoping that the next thirty days bring more healing. But if it doesn't, we know that we will learn to adapt, accept what may be, and begin to heal our worn, torn hearts.
Just as healing a broken body is a process, so is the healing of a broken heart. And maybe we never heal to be the same person that we were before. I hope our hearts will heal to be stronger...and more compassionate. Maybe our hearts will heal to have unimaginable courage.
Maybe as our spirits heal, we will be a little better than we were before.
And maybe our hearts will learn to be thankful always for the small miracles.