A few years ago, I wrote a blog about my son.  It’s still out there.  If you want to read it, it can be found here-https://nicolelenzen.blogspot.com

Back then we were in the weeds, struggling to understand if we could have hope.  Back then when Henry had  symptoms of something devastating and no one could tell us what it was.

The process of looking for answers was excruciating.  He got his diagnosis at the age of five.  Six years later, we have a name for his syndrome.  It is even more muddy, the future more and more uncertain.

The need to write never left and it was accompanied by an urgent need to marry it with image.

I’ve tried to let myself come up for air as I try to tell this story with my voice.  My voice.  I would rather allow Henry to tell it with his voice.  Every day, we work on hearing his voice.  It is becoming clearer and more real.  The reality of needing to write a “letter of intent”- who Henry is, what he loves, what he wants- for his future makes me want to dive deeper and hide.    My boy is no longer so little.  The world we are entering has become terrifying and too real.

I have never shed tears for my future.  It is still nebulous, ill defined.  I don’t cry for our life as it is now.  Those tears are for those ghosts in my past.  I need to make our now real, our future real, bring it out of the shadows and clearly into a beautiful light.

This is called Letter of Intent.