I had the person who was drawing Gage’s blood this morning shoo me away and essentially say “Let us do this” when I asked him if he wanted me to hold his hand today because she appeared to want to get started and I was trying to give him just a little control over the something, however small.

I said…”I get to ask him if he wants to do this a certain way.”

She dismissed me by ignoring me.

“He’s been here like over 150 times. He’s over it. I am trying to help him through this.”

She dismissed me again.

“Sorry, but you don’t get to tell me how I can comfort my child.”

She dismissed me again.

I was pissed.

I get that SHE wanted to ignore it and perhaps she thought that was best for Gage to not get into it with him in the room. But you should know that I don’t have the slightest problem with Gage witnessing me advocating for him. In fact, it’s an important part of our relationship – this caregiver I am, in his medical realm. Because he has to trust that I always have his back.

I am upset about it because she has no idea what is going on with Gage outside in the real world. I believe that Gage is going through a particularly hard time right now with being a patient. I know his status as a patient will never change. And I think he is just realizing this will never change.

She does not know that he often says he’d rather die than go to the hospital, and often when we leave the hospital. She isn’t aware he is watching his sister’s care for the same kidney disease intensify. She does not realize that Gage hits himself out of frustration and emotional pain. He’s struggling a lot right now and it’s a tangled mess of issues that we are trying to sort through.

And you know what? She doesn’t need to know.

She needs to follow my lead about what I think he needs right now. Period.

Just a note to health care workers: I get that you have seen a million people. And that with mangled care, things are rough and tight and suck sometimes in your world. I get that there are parents and caregivers that get on your nerves. I know that sometimes that is me. I get it.

But you don’t always know our back story. We caregivers do. And maybe, just maybe, if you followed our lead, we might be able to teach you something that might help you with another patient or family.