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.