But it’s not FAIR!

You know, normally I can sit with Teddy through nearly anything and not cry. Bad labs. IV placement that takes over an hour. Wound debridement. Punch skin biopsy. Ultrasounds and Xrays that involve holding him down and listening to him scream for a half hour or so. I can get into a mental place where I just do what needs to be done and get through it. It’s the same mental place I worked on when both Wally and Genna were going through their Screaming Through BathTime phase.

I mentally focus on HIM and the medical people. What can I do to help the medical people get this done faster? What can I do to help Teddy calm down? Barring that, what can I do to reinforce to him that his feelings are valid, that I hear and understand him, and that I’m here for him and it’s OK to scream and cry? We’ve walked out of terrible IV placement sessions to be told “gosh, I love parents like you. You make this so much easier and faster by helping hold him and comforting him at the same time.” Which is nice to hear, because sometimes I feel like I could be doing better. It’s also somewhat confusing because I can’t picture another way to handle it. I suppose some parents just aren’t involved? Or are over-involved? I don’t know.

(Note: I don’t do their jobs for them. I do not feel it’s my responsibility to hold his arm still while someone’s trying to put in an IV in it. I can hold HIM still. I can hold his body with my arms and I can hold his head with my hand and do so lovingly and also firmly. But I won’t hold the arm down for you. If you can’t do that yourself, you get yourself a helper. I’m busy.)

But I have to watch the thoughts I let go through my head during these times. I have to be able to SAY things like “I know you don’t like it.” and “Ouch! I don’t like this! I want you to let go of me!” and “I know, this is no fun. You want to get down. You want your arm back.” without actually thinking about what I’m saying.

It’s possible. I focus on the words themselves, not their meaning. Because as soon as I start to really think about what I’m saying, then I think about what’s really going on. And how many times – how many times – we’ve been in the same position. I start thinking about how NOT FAIR this is. And then I start focusing on that. But this isn’t fair. It’s NOT FAIR!!!



And that’s what starts the tears from MY eyes. It’s not fair. It sucks. Seriously, seriously sucks.

It’s the times when I stop just accepting Teddy’s kidney failure as just The Way Things Are and start thinking about The Way Things Should Have Been, or The Way Things Should Be or The Way I’d Like Things To Be. That’s what’s hardest for me – not that our life is so hard, but that his life is so much harder than I think it should be.

Those are the times I want to tell God that I think He and His Plans Suck The Big One. 🙂

So I usually allow myself to have those thoughts once we’re back in the car, just for a few miles, I let myself dwell on how much this all sucks. And sometimes I let myself entertain thoughts of the future… thoughts of the inevitable next transplant, thoughts of rejection, thoughts of the various viruses, cancers, etc. that are an ever-present risk. Sigh. And then I turn on the music and let it all go. There is nothing I can do about it.


One thought on “But it’s not FAIR!

  1. Oh, Sara! I think about you guys all the time! You’re right, you have the right to say “it sucks”! You are doing such a great job! You are what he needs and doing what he needs. Keep up your strength. We are sending strength and thoughts your way all the time! Hugs!

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