Beach Glass

Where do I even begin? Let’s ramble for a moment, shall we?

We’ve been in the hospital now for almost two weeks. We’ve been away from our daughter for a little over a week, and we’ve been blessed that Blair got a job working out of the city so he’s here with us. I get up every day and go to the hospital to see my son.

This life is nothing that I ever even imagined for us. No one ever thinks this will be them and I pray that it never is. I would never wish this on anyone. I see Moms and Dads in the hallways, on the elevators, eating lunch, trudging in that slow hospital shuffle that only another parent with a child with chronic illness knows. It is a terrible thing to be able to tell someone “I understand”, because I hear the immense pain behind those words. They carry such a burden with them.

What someone is saying when they say they understand goes far beyond what people comprehend. You are telling me you understand what NPO means, what TPN and PPN are. You understand how good it was that he kept in IV in for a week, that you know what it’s like to hold someone down to get blood drawn. You are telling me that you know what it’s like to sit in the hallway, listening to someone you love screaming in pain, knowing there is literally nothing you can do to help that person.

If you don’t know what these things are like just bask in the thankfulness of that. Live there a moment. And then tell me “I don’t understand, but I am sorry.” Those are my favorite types of people.

I have entered into the world of “Chronic Illness”. Women in my support groups were talking about their Heart Kiddos starting school…the notes they write, the meetings they have, the constant phone calls to the school nurses. We all grew up knowing that one kid who needed his medicine. That one kid that got to sit out of different sports in PE. That’s my kid. That’s his life.

I would love to say that I’ve accepted that. Most days I have. This week it’s been weighing heavy on my heart. And I want to scream. Because I don’t want to hold him down any more. I don’t want to give him wash cloth baths on a chuck pad. I don’t want to have every single thing I do with him dictated by someone else. I don’t want anyone else to draw up his medication. I don’t want anyone else to rock him to sleep. I don’t want another vital check, interrupting moments of peaceful snuggle time. I don’t want Ellie to ask to see her baby brother through a screen. I don’t want to have to ask someone to love my daughter so I can take care of our son. I don’t want to live out of the Ronald McDonald House. I don’t want to not know when we’re going home; I don’t want to accept that there might never be answer as to WHY his lung filled with fluid.

I balk at it. I am resisting it. I am not “letting it go”. I want to be in control…of something, anything, for a brief second.

And I am not.

I am not.

If you can believe it, this was the first time the nurses in this Unit have actually seen me cry. Two of my favorites came by just to see how I was doing. They sat on the bench and rubbed my back and just said “No mom and no baby should have to do this, we’re sorry.” And I needed that. Because part of me still doesn’t feel like people truly comprehend the level of pain I watch my son go through.

So he can live.

Believe me, if there was an out button, I’d take it. Time feels so stolen from us. Six months ago I had a baby and I forget that so often.  Many days my son feels more like a science experiment and less like a baby. Many days I feel less like a Mother and more like a bystander, someone looking into a life that others would deem “unimaginable”.

I’m stuck in this place where I want to describe to people all the things we go through to keep him safe and healthy, and not wanting people to know just how bad it is. I hear often, “I can’t imagine what you are going through” and most of the time I don’t want people to imagine. Some days, the sharper edges of me, the raw edges that are broken against the rocks every day, wants you to imagine. I am human, and some days, I want someone else to hurt too.

I do not feel sharp or focused. I do not feel clear. I do not feel clean.

I just feel worn down.

I feel like Beach Glass that you find at the ocean. Worn and dirty and crooked. Beaten back by the waves over and over again, until I am washed up on the shore, buried under the sand.

And I know, I know, I know that that Sea Glass is beautiful.

But it’s taken one hell of a beating to get that way.

I am waiting for the Beauty.  I am waiting for the discovery moment, when someone will scoop up from the sand, clean me off, and see the beauty in this.

But right now I feel like I’m still in the Ocean, taking that beating.

The waves crashing, one right after another after another after another after another….