The early days of coming to terms with our child's diagnosis was painful.  

I was balancing hope and reality equally. 

Those around me, meant well and their intentions were likely to find verbal consolation to our son's tragic birth injury, but I kept hearing time and time again, he'll be just fine. 

Stories poured in - miracle stories in fact.  Babies that had similar birth complications like our son had who went on to lead normal lives and find full recovery.  

Everyone telling us that our son would be just fine. 

But he wasn't okay or fine... and wouldn't be.  

While the miracle that he survived felt like more than enough for us, we had a hard time getting others to realize that he wasn't going to be okay. 

That he wasn't going to be one of those happy ending stories.  I wanted it, boy did I ever want it. 

What mother wouldn't want their child to be healed? 

It almost felt like the world was placing expectation on our child being "normal" and "disability free." 

I watched many friends and families remain in denial of our son's severe condition for months, some even years after his birth. 

Constantly telling us he'd catch up, all would be fine, he'll learn to walk, and talk - you just wait and see. 

Part of me wanted to believe them.  But I knew.  I knew with my entire soul the gravity of the situation. 

I couldn't run from it, I couldn't hide from the fact that our child wasn't one of those lucky cases where everything is fine. 

Where you leave the hospital and the NICU was a distant memory that you looked back on with sigh of relief because the worst days were behind you. 

Sometimes things aren't all flowers and roses, and you can't dust things with sugar and say things are going to be okay. 

No one has a crystal ball, no one can ever predict if things are going to be okay. 

It made things so much harder when I couldn't get others to understand our son wasn't going to be okay. 

His brain damage was severe, irreversible - permanent and forever going to alter the course of his life and ours.   

They wanted to believe it was going to all be okay, because they couldn't conceive of anything else. 

How would we have anything in common otherwise?  They would get to experience what they considered a perfect child within their own family unit, and we wouldn't. 

It's okay to tell someone you don't know how things are going to turn out. 

Nothing is wrong with saying you don't know what the future will look like but that you'll be there regardless. 

We need reassurance that our support system will still be in place - even if that means that our child doesn't find healing or a cure.  

We need to know that it's going to be okay if he isn't just fine. 

We need to feel like it's not shameful if our family doesn't have a fairy tale storybook ending. 

We need you to stop telling us it's going to be okay - when we know that he isn't.  

We need you to accept it just as much as we're grabbing and struggling to come to terms with it. 

We need you to acknowledge that not everything in life winds up being okay no matter how much we pray and wish that they were. 

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