It all weighs so heavily on me.
Just give me the grading rubric. I’ll meet the expectations and earn the A, like I always do. I just need parameters and instruction, guidelines to follow, and I know I will do what is right.
But real life doesn’t work that way. You’re thrown into a reality you never imagined for yourself, and you are grateful – my goodness, are you ever grateful – but it’s all so hard.
No clear path exists. And you are forced to make choices, hoping they are the best choices for your son. But none of it makes sense, and you are always grasping at straws, guessing at what the right choice might be.
And then – then – life throws you into a global pandemic, and suddenly, nobody has any answers.
So you read everything you can get your hands on, and you have conversations with every medical professional you know.
Three long months pass.
And you know: You can’t keep going like this. It feels just like it felt in that last month before I gave birth. Every part of me screams to protect at all costs, and yet this still, small voice says: “He has to live.”
It doesn’t mean I won’t protect. So much of what I do is to protect. That part is easy. The part that is hard is accepting risk so he can LIVE.
But that is where we are. And it is draining my resources, mentally, emotionally. The decisions are not clear-cut, there is no answer key.
All I can do is strive to find the right balance. Protect his precious life and allow him to live his best life.
It’s a long road ahead but we journey together. Always. No matter what.