I slept 12 hours. Mac has discovered that I've removed cords from all the electronics.

Cool, Kat. I'll meet you at the restaurant at 6.

How is he responding, msbelle?

My training from the Sisters of Notre Dame is serving me well with this. On the one hand, I'm so rage! smash! hate! about the situation that I am verging on irrational. But, SND training inserted here, I see the other side too. We are talking about days that are gone, not months or weeks or years. We are talking about dealing with bureaucratic systems that are grinding their slow grind. And I am dealing with a Case Manager who has only been a CM for a month and she's the only one at the care facility right now for 35+ kids and our case is different because we have private insurance.

She is also use to dealing with families that are completely ineffectual with navigating the system and she doesn't understand the level of systems-related/systems-dealing capital we have and it never occurs to her that we can make things work because we know how to.

So, for example, when the DME wasn't working, we needed for her to clearly communicate that , "Oh there's a problem with the insurance." If she had clearly communicated that we needed to find another vendor to provide it, I would have done it DAYS ago. And if she had said, I don't know how this works with your insurance, I would have called Grace's PCP and had him do it (as I did Friday after 1:00 when I realized her colossal fuck up) and he would have gotten that set in motion faster than the last hour of the week (which he did for us).

Moreover, I know the vendor that we can use because Noah came home sick on the same insurance and we can most likely use the same vendor. So when after I bitched her out, I also told her precisely, "I am saying how angry I am because I need for you to hear that. I am not asking you to apologize or to fix it or take responsibility, but I am telling you that I want you to call this vendor right now and to send the authorization and the order immediately." And she did do that, but ineffectually as ever because she didn't have the authorization sent and so we won't get our equipment.

I also get that Grace is not the only child she is trying to help and get appointments etc for. And in fact, lots of kids are out of the facility in the hospital now and they need her to do appointments etc. But, as I told her, I don't care about other kids right now I want Grace's needs met.

And I get that this is not a tragedy. It's not the end of the world. But UGH.

In other news entirely, did I mention that the facility took Grace + 6 other kids to Disneyland on Wednesday? Grace was not such a fan of the rides, but she did like PotC and eventually warmed to Cinderella.

And this is in part what makes me saddest. We have had a really lovely experience because we have worked to have a lovely experience at this facility. They have kept our daughter alive and helped her thrive. We have found the staff to be genuinely kind and loving and very hard working.

So when this fuck up happens it does color my view of the experience and THAT makes me sad.

-0p[

The above is what the Spare Cat pounced upon my keyboard, saved for Buffista posterity.

Kalee is at that stage where all she wants to do is hold my fingers and walk - oi, my achin' back.

And the dog park gives me the opportunity to gossip with the neighbors - who showed up about 7:30, which is why we stayed that long.

Kat and msbelle, you are in my thoughts. Lucky, lucky, lucky, Lucky 13.

Kalee is at that stage where all she wants to do is hold my fingers and walk - oi, my achin' back.

That phase still hasn't ended for us. But oh man, heat was our friend on this one. And a little push walker like this: [link]

yeah we'll get to see ita!

Kat, what is Sisters of Notre Dame training?

Oh kat, I feel for you.

He has moved passed anger, that was at 3am when he figured things out initially and woke me up. Now he is more resigned and trying to manipulate his way out of it by giving hugs and doe eyes and then offering up "can I get what I want if I just do this?" Yeah no. Part of his lesson for this weekend is full understanding of mom "sticking to her guns".

Stay strong, msbelle.