The stuff you don’t see

Here’s a cute kid, peacefully relaxing in the shower. 

From this clip, you wouldn’t know all the struggles that lead up to this moment. You wouldn’t know the challenges from the night before, or how hard it is for Esther to cut his hair, or the challenge of getting him set up in the bath.

So many things people just don’t know about.

How hard it is to find equipment that will actually meet his needs before he grows out of it. His inability to tell us what’s wrong. The late nights of trying to get him to settle down and stop fussing when we’re both exhausted. How exhausted we are the next day when he still needs care. Making sure every meal has enough of what he needs to be healthy. Struggling to spoon-feed him every meal, even when he’s being stubborn and refuses to open his mouth. The feeling that we’re never quite doing enough for him, and not always knowing what the best decision for him is. The guilt of leaving him out of some things so that we aren’t holding the other kids back. The constant restrictions on what we can do on a daily basis. Having to account for his limitations and needs any time we plan a family outing or vacation. The constant “what do we do about Hunter?” for every situation. Picking him up and putting him down with out hurting my back, as he grows taller every day. Having him home from school during quarantine for the longest period of time since he first started going. Knowing that so much of the burden has to fall on Esther while I’m working. The stress headaches. The noise headaches. The underlying depression that just feels inescapable sometimes.

I don’t like to complain, but those things exist. And I will always be thankful for the perspective these challenges give me, and for the friends and family who have been there and continue to be there for us. And I’ll always be thankful for my sweet son and the few abilities he does have. 

But it’s still there. It doesn’t go away. And no matter how much valuable perspective it might give me, or how much positivity I muster, I’ll still never be happy about it.

I wish he could just be normal and healthy and run around and play with his brothers and speak to me. But that’s not reality. The reality is it’s hard. The reality is I hate it. 

But that’s okay. 

It’s okay to hate some things.

I don’t have to be happy about it to be happy. I can even be sad about it and still be happy. Though our specific situation may not be relatable, everyone has stuff they deal with that the rest of the world can’t see or fully understand. Happiness comes from adapting to those things. 

So, I’ll keep being sad sometimes, but I’ll keep being okay with that.

And I’ll keep being happy about this sweet, adorable son and the gift of moments like this one.

“Happiness is a gift and the trick is not to expect it, but to delight in it when it comes, and to add to others people’s store of it.” – Nicholas Nickleby

“A thankful heart is a happy heart.” – Junior Asparagus