Moving Concrete

Today feels a little lighter, but the past few days have been heavy. I've felt like I was slogging.

Though when we returned home from the hospital I was optimistic that Cora was much improved, it sort of faded within the first day. Her cough is definitely better but the throwing up is unfortunately still very much with us, and we spend a good amount of our time with her, soothing her when she's sick, suctioning, and trying to make her feel better.

It takes a little bit out of me each time -- just to see her uncomfortable and suffering through yet another episode, and to know that despite countless changes of formula, feeding rates, feeding methods, and consultations, there really isn't anything I can do to make it better. To feel this hopeless reality that my sweet little girl has truly never had a single day in her life that was free from pain, or discomfort, or some form of struggle. Well, it sinks me.

And after a few consecutive sleepless nights due to the aforementioned episodes, I was feeling pretty sunk as of yesterday morning. But it was time to slog to yet another doctor appointment. This time we were seeing an otolaryngology specialist because there had been some question about Cora's hearing. To be honest, Jason and I had more or less blown it off. When Dominic was a baby he failed the newborn hearing screens and a couple of subsequent tests before he ultimately passed with flying colors. So I was somewhat blown away as this specialist, someone I had never before met, informed me that Cora has, without question, "severe" hearing loss.

She discussed it as thought it was a diaper rash or an infected toenail, and as she talked, my heart sunk deeper and deeper until I'm pretty sure it landed in my foot. It sunk to the lowest point.

It's not that I think you cannot have a good quality of life if you have hearing loss, even if you can't hear at all. It's that I just feel, combined with everything Cora has endured, it's too much.

I feel as if someone, literally, has asked me to help them carry a very heavy load. It's as though he has a large pile of concrete he'd like me to help him with. So, in a very good mood, I walk over to the concrete pile and he hands me a block. And even though it's heavy, it's okay, because after all, I'm happy to carry it, because someone needs to, and because that's life.

But then after I walk away a few hundred meters, he calls to me that there is one more block that needs to be carried. I sigh and turn around, and he loads me up with another block. This time, although I'm still optimistic, I have to admit my arms hurt. But I know I can do it, and I keep on. But of course (and you see where this is going), he just keeps calling me back and loading me with more blocks. And despite it all I want to say, I'm still standing and, I can carry another one, to be honest, I feel more like saying, I have too many blocks now and I want it to be someone else's turn.

So that's my analogy, but it doesn't change that fact that this is what's on our plate, like it or not. And the longer it goes on, the road is ever more complicated rather than becoming more clear. And it is my very large, very continuous spiritual challenge to accept it, and to not just tolerate it, but to fold it into my life -- a life that still needs joy and laughter and contentment despite whatever blocks are handed out.

So I am learning, always learning, to live by this question: can I just do this one thing? There is no way I can face the uncertainty of Cora's complicated heart condition. No way I can live with not knowing if she will ever eat her food by mouth, or if she will ever speak the relentless three year old mantra of, mama! mama! mama!, or if she'll run around, or if she'll spend more months in the hospital, face more surgeries, or if my heart will break more than it already has. I know with certainty there is no way I can face those things. I really do not know how to approach those overwhelmingly big and spooky beasts.

But I can do just this one thing, whatever that next thing may be. I can put in a load of laundry. I can suction Cora when she's struggling. I can carry her feeding pump and her oxygen tank in a backpack, and her in Baby Bjorn and I can walk her to the park. I can unload groceries. I can get the kids dressed. I can hug them all. I can take a shower. I can go to work.

I can even be happy, really happy, quite a lot of the time. Not so much yesterday. But overall, I can. And I don't get too down on myself for those days when I really, really do not feel like living this very big spiritual lesson.

I think if I was grateful and happy every day through this, that would just make me weird.