April 2, 2010

This is a risky post. It will not win me any motherhood awards, and it will likely make a few people cringe. But, I try to speak the truth here, when I can own up to it, and to paint a realistic picture of what this journey is like for us and for the countless other families who endure the pain of caring for a sick child, or even a sick adult.

I like to call it “compassion fatigue.” It’s my term for when I have been sucked dry of all empathy and I can no longer see Tanner’s suffering as anything other than an annoyance to me. I’m there right now. It’s 10 pm and for the second night in a row, Tanner is still awake and I am bunking in her room. She is terrified thinking about a TV show she saw five minutes of the other day before we realized it was scary and changed it. She has come out of her room no less than 20 times since we put her in bed at 7:30. We had a day full of activity and I know she must be exhausted. And, I know with my brain that she must truly be too scared to care about consequences because she has opted to endure several of them in order to continue coming out of her room and to avoid sleep.

She also, I believe, has a urinary tract infection for which we will have to go to the doctor in the morning to have a urine sample analyzed, if we’re lucky. If we’re not lucky, we will end up in the ER sometime tonight. I’ve had a urinary tract infection and I know how it hurts, so in my brain, I know she is uncomfortable, although we have given her a healthy dose of oxycodone.

I also know in my brain that she didn’t mean to skin both knees today and have to be carried 3 blocks home, and that she didn’t mean to tucker out on the hike we took this morning and have to be piggy-backed a good ¼ mile or more back to the car. I know in my brain that she didn’t know that popcorn would burn her mouth when she asked me to make it after asking for and receiving two cartons of macaroni and cheese and three glasses of milk. She didn’t know we would have to throw it away and I would have to interrupt my dinner for the 10th time and get her goldfish instead.

In my brain, I know all these things and I know I should be sympathetic. But, unfortunately, your brain doles out knowledge but your soul doles out sympathy and understanding, and my soul is all shut down today. I have compassion fatigue… nothing left to give. All I can hear right now is “I want…,” “I need…,” “Get me…” “When will you…” The part of me that cares about the child behind these requests stopped functioning sometime around 1 pm today when Tanner interrupted the 15 minutes I tried to claim to myself eating lunch on my bed with the TV on. She needed miralax because she felt constipated. A realistic request, but so ill-timed.

I know she is only six years old and that she doesn’t understand when she’s asked for too much, but she has. I’m just filling requests like a begrudging robot at this point.

My husband wonders why I stay up so late after everyone is gone to bed. It’s not that I don’t need the sleep. I fall asleep sitting up almost every day while I’m putting Jake down for a nap. I stay up after everyone goes to bed because I know, if I am lucky, that there is a good chance that for hours, no one will ask me for anything. That I can do exactly what I want to do, uninterrupted. And, it’s worth whatever sleep I lose doing it, because it preserves my sanity and allows me to wake up the next morning and fill requests all day without feeling resentful about it. I have a feeling a lot of Mom’s do this.

But, I think that having a child with cancer adds a layer to Momdom that complicates things. That makes your need for a compassion recharge that much greater. And, I’m fresh out.

It’s an ugly thing to talk about and definitely not one of my finer moments, but it’s where I am. Tomorrow, after the visit to the pediatricians, and possibly the Vandy ER, after the Easter Egg hunt at church, I will run away. I will go to the movies with a girlfriend, or even just by myself. And my wonderful husband will recognize my need for this recharge and send me off with the reassurance that I should stay gone as long as I like.

And, when and if I do come back (lol), I will do more than just go through the motions. I’ll add a kiss and a hug to the bandaid and Neosporin routine. And, I will actually mean it.

Love,
Beth