Hope

There’s  something that has been nagging at me. Something that has been bothering me.

CDG has a huge spectrum. It is incredibly vast. Some individuals are tube fed, some are not. Some have seizures, some do not. Some can walk, some cannot. Some can speak, some can’t. Some are in the hospital for minor illnesses, some are not. It is crazy how the same diagnosis is really just never the same.

I am overjoyed for families when they share accomplishments of their children. I am genuinely happy for a family when their child takes unassisted steps. Or writes their name. Or says “mama” for the first time. And yes, there’s even a gentleman with the same diagnosis as our son who has gotten married and had children. Phenomenal, right?

These accomplishments are to be celebrated. And many times these accomplishments give hope to others with the same diagnosis….

But not me. It doesn’t bring me hope. I am not trying to be negative or a downer but it doesn’t evoke that emotion in me. Just because another child with the same diagnosis has gotten their drivers license doesn’t mean mine will too. Or when another child can speak full sentences while eating an ice cream cone, it must mean we can achieve that too.  It doesn’t. No amount of “never give up” will get our son to the same place others are. I celebrate with these parents but I don’t hope.

I used to. In the beginning I watched video after video of children achieving things and I hoped like crazy to see the same things. I was a bit naïve, thinking it was all possible.  But 6 years later, we know who Christopher is. We know what end of the spectrum he is on. And I’m not hoping to get him to where others are.

I’m hoping to get him to where HE will be. His accomplishments will be his. His accomplishments will be celebrated no matter what they are. I think it’s really easy to watch others and think their accomplishments are possible, but that’s not true in every case. We could be in therapy all day every day, and we may never ever achieve what others do. And I’ve accepted that. I don’t long for him to achieve things others have.

My hope is for him.

My hope is that he knows that regardless of what end of the spectrum he is on we will keep going and never give up.

My hope is that he knows that we may never hear his voice with our ears but we do with out hearts.

My hope is that he knows if he never walks, I have two legs that will do it for him.

My hope is that he knows how deeply loved he is and NO amount of accomplishments will change that.