Saturday, January 13, 2024

Three Weeks

Three weeks.

How has it been three weeks?

Last night I went to dinner with some of my cohort. I needed those ladies! I mean, the food was really good (and I ate waaaay too much), but that paled in comparison to the connection.  We laughed and talked. And they listened as I spoke of you, of what it was like, of what it is like. They were just there, so present, so with me. 

And my soul needed that connection desperately. 

Recently someone asked me about New Year's resolutions. In the best of times I struggle with those, so I admitted to not really having set any.  "So just to have a happy and fun year?" 

Um, no. Frankly, my hope is to get to the point where breathing doesn't hurt. 

I wanted to scream, "I just buried my baby, my baby! Why haven't things come to a screeching halt??

And yet, I know they don't, they can't. 

But you still live, not only on the other side of death, but in the lives of those you impact, even the ones who have never known you, or known of you.

Facebook reminded me about the time a few years ago when Joseph got the flu.  There was a struggle to get the antivirals*. One of the obstacles is that you had needed Tamiflu the year before, 50 weeks before to be specific. But insurance only allowed it once a year. In talking with insurance, the pharmacist in charge no only overrode the limit for you, but also revisited the guidelines and changed them to every six months right then. So other people who needed it earlier have also been able to get the help. And you did that. You. My son. The little boy who never took a step, never spoke a word with his own mouth, who needed care for even the very basic of life's essentials. 

You help save lives. 

Oh, my little boy. I miss you, I miss you desperately. My goal for this year is to get to the point where it doesn't feel like my own heart is going to stop. 

I miss you. 

"Come back. Even as a shadow, even as a dream."

*Here's the post from 7 years ago:
Part of last night's frustration was that the on call doc didn't feel like the family needed Tamiflu. "The CDC actually recommends against it's use prophylactically because it's just not effective." And had to be talked into prescribing it for Aaron. (His poor nurse who was the go between.) Silly man obviously hasn't worked much with special needs moms. We don't just take a doctor's word for something, we look it up.
The CDC actually does recommend against widespread or routine use because it could lead to resistance to antivirals, or a shortage of antivirals for those who might need it. BUT it is recommended for people at high risk for developing severe complications (Aaron??) and for those in close contact with them with a known exposure.
And yeah, my doc was calling it in within minutes of getting to the office this morning.
Then the other part was that Aaron had the flu, and was on Tamiflu last February, 50 weeks ago. His insurance will only allow it once every year. It hasn't been a year. I called this morning, and not only did they approve it, the tech who took the call thanked me for bringing that to their attention and the pharmacist in charge was at that moment revising the guidelines for once every six months. So she said that Aaron helped out a lot of others, too, who might not have made the phone call. Yeah, don't mess with us special needs moms. We DO do better research than the FBI.

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