The enormity of this diagnosis hits me in waves.  I can go weeks, months even, not worrying too too much about the future.  But then BAM – a test result comes back, a new behavior emerges – and I’m thrown into a tailspin.

This latest wave has hit me like a tsunami.  And it’s washed me up on a desert island where I feel completely isolated and alone.

And yet I can’t give up hope.  I won’t give up hope.

My kid needs me, and not just in the typical way a child needs a parent.  I am her voice, her hands, her advocate, her life support.

She and I have many adventures ahead of us so I’m working my way off this desert island.  What’s helping me right now is plotting out our next adventure – which will take place on a tropical sun-drenched island in February.  More soon on this.