Thursday, January 27, 2011

Frustration and Darkness

The darkness refers to my mood.

As hard as I work to contribute positive energy and work in the world of CF, I, like all of us, have dark days.

It's not that we got terrible news. In the grand scheme of things, Jacks is still doing fantastically well. Well, except for the fact that my growing child hasn't gained an ounce in almost 4 months now. Since his hospital discharge, J has held steady at the 20 lb mark. He's dropped from the 90th percentile to skimming below the 25th. And while I struggle to maintain a winning outlook in spite of his slide down the growth chart, I might just slap the next person who says "with those cheeks/arms/legs? No way he's struggling to gain weight." Put this on your list of things to never say to a parent of a CF kiddo. I know it's well intended, but it falls under the "But you look so healthy" category. I could have kicked myself when I scrambled for the unit conversion app on my phone and discovered that in spite of everything- the massive calorie counts, the midnight feedings, the charting, the frying, the whipped cream- my smiling little boy sat on the scale weighing EXACTLY what he did a month ago when "the weight" became "the issue". I could have SWORN he was packing on pounds. I could have sworn his face was fuller, his thighs more robust.

It's not TERRIBLE. But it's disappointing as all hell, and it brings up all the nasty, mucky, dirty feelings that I most often don't have to face, like the crap at the bottom of the fish tank that swirls up when you add water. Fear. Anger. And Mortality. You can argue with me all you want that mortality isn't a feeling, but you'd be wrong. Driving home today I caught a particularly stunning view of the late afternoon sun, framed by artfully brushed clouds and towering oak branches. Most days I would have only been struck by the moment of extreme aesthetic pleasure. Em and I talked about how very beautiful it was, but in my head I only thought, "it means nothing". Not my usual MO.

We have another month to reverse this trend. Meds have been tweaked for probable reflux issues, eating plans altered, and I kid you not, a deep fryer has been placed on my kitchen counter. NO, the situation is not yet desperate but it is on a steady decline, and today we were told that if it continues after yet another intense effort to gain, it will be time to discuss 'other options'. Feeding tubes are not the end of the world, and if they help Jackson grow and be healthy, then we will embrace it.

But all things being equal, today is a black day. I'm pissed. I can't shake the angry feeling of having done everything in my power and it not having mattered or been enough. I feel like swearing at everyone I meet. I don't feel kind or altruistic or helpful or any of the things I want to be. Nope, today I want to kick the dirt and exclaim "it's not fair".

I'll get back up. I'll feel like fighting again tomorrow, and teaching Jacks to fight- for someday this battle will be his alone. And I'll remember that my path is to aid in easing that battle.


  1. Please don't think that all that you have done has not mattered, or is not enough. Imagine what the result would have been if you didn't put in all that effort, all that care. But you are right, it isn't fair. I feel your frustrtation :(

  2. Aww, dude. I'm sorry. Different issue here, but similar challenge. I hope it turns around for you. I don't know if I've specifically mentioned how much you impress me. If not - consider it mentioned.

  3. totally know that feeling and go there sometimes too....we don't struggle with the weight issue but on wednesday aidan is getting a port because he's always sick no matter what we do...these are the days when i just want to yell at everyone how unfair this is...but you're right, we get back up, put a smile on and make tomorrow better..
    when aidan was little, we added heavy whipping cream to all his food!

  4. I just found your blog... We all struggle, we all question ourselves, we all get angry and we all get sad. It's not a's just normal. You can do this!
    Stacey @