Saturday, August 15, 2015

Tired, sad, and feeling quite sorry for myself... (and apparently pissed... pretty damn pissed)



I said to someone recently "It is odd to be so closely aquatinted with terror." We live it, we breathe it, we eat it, some days more than others but still, always.

My kids are sick, both of them. It's scary for me when my eldest gets sick. I remember the first fever he had after Damon died. He slept in my bed with my hand on his chest for two days. Terror. In my mind fevers mean death. Logic has no place here. The mountains of knowledge banging around in my brain have absolutely no chance against the one in a million time the unexpected happened. MY baby died...

We've lost our second baby sitter in six months. Most people would say "life happens" or "it's no big deal" but to us it's enormous. Beyond enormous. These people represent my son's entire world and I fall in love with them, how can I not? The break is an vast wound that I can't reconcile. On top of that news from his immunologist that he just can't do childcare; its too risky.

I was despondent with fear and worry, for my child, for my job... my relief at the prodigious grace willingly supplied by my PhD advisor when I finally broke down and told him the situation was swiftly deflated...

He got sick. It's always terrifying when he gets sick. He had a high fever, on a weekend, naturally. He was diagnosed with an ear infection and given (more) antibiotics. All in all I think I handled it pretty well. I was scared but didn't completely freak out. Then after a day completely fever free it came back. This is the thing they tell you to freak out about... this isn't normal... this isn't supposed to happen. His doctor was out of town and sent us to Urgent Care. His daddy has been sicker than I've ever seen him in the midst of so much turmoil and just couldn't go with me. I went alone. The Urgent Care PA treated me like I was making things up, or perhaps just stupid.

"It's just a virus"

I was told those exact words two days before Damon died...

I was dismissed with the same damn diagnosis that is handed out like candy on Halloween to every single kid for whom another cause for fever is not apparent.

Forget the fact that the child is IMMUNE DEFICIENT, or that research has demonstrated that a normal WBC (which he had) doesn't rule out infection in SEVENTEEN PERCENT of cases, or that the last time this happened he had occult pneumonia which is only diagnosable with X-ray, or that I happen to be a highly educated scientist and HIS MOTHER. She didn't ask, she didn't care, and this is exactly the kind of dismissive bull shit that killed my child.

We celebrated this morning when he woke up without a fever and were crushed when an hour ago it was back.

So back to tired, sad, and feeling quite sorry for myself... (and apparently pissed... pretty damn pissed)

I tell myself a lot not to feel sorry for myself but I am and I do. I feel defeated as if whomever runs the universe feels some kind of offense at my rising after each beating and is damn determined to see me bleed.

So here I am, holding my breath... as always it seems and, in case you didn't catch it, feeling quite sorry for myself.

Until next time...

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