When things go exactly as expected, and the unknowns of the future

Well, yesterday went about as well and true to form as it could have possibly gone. I am happy to report that both of my children were EXACTLY, 100% themselves yesterday when their therapist came to our house. Chaos ensued as promised, and boy did she get a glimpse into the reality of my every day shit show.

In case you missed it, the gist of it is that my 2 older son’s counselor/therapist came to do a session at our house today because of a temporary lack of office space. It was loud and chaotic and oh so true to what our life really is.

Phoenix, my younger of the 2, was just sooo unapologetically himself. In true Phoenix fashion, he doesn’t know a stranger (did I mention that this was HIS first time ever meeting her?!?), and was literally physically attached to her the entire time. He ran around all morning before she came literally cheering that “she’s coming over today!!!!!”. Could NOT have been more excited.

He’s never met her. She’s only worked with Christian, and is new to Phoenix as of today. Yet that didn’t stop him from making her feel like she was the most loved and important thing in his entire universe. Very typical of him 😂. Knows absolutely nothing of boundaries and loves FIERCELY.

She’s coming back today to play with just Phoenix alone with Christian is in school…..but first…another absolutely terrifying trip to the doctor with Atlas.

As we all know, he’s been…uh…a bit stressful lately. Ya know, with his health and all. So that’s just all gotten worse. He’s started losing weight again (muscle mass), gotten weaker, (obviously, because of loss of muscle mass) and yeah. It’s all just a shit show. So we have another appointment this morning, and I honestly have no idea how it’s going to go.

Is she going to admit us? Is she going to recommend some drastic things (that’s happened already), but more urgently this time?

Is she going to have nothing to offer and just be like….”sorry shit sucks, it is what it is”???

Like…this is my fucking baby. And he’s quite literally withering away into nothing. My gut feeling has been SCREAMING at me for weeks now. And it’s only gotten louder.

I am genuinely so afraid for how this all turns out.

With our genetic disorder, the prognosis is an estimated life expectancy of 8-13 years old. Okay…well…my oldest son is 6, almost 7, my middle boy is 5 in 3 weeks…and the baby just turned 12 months old.

The way THIS particular genetic disorder works is that not only does it get worse through the generations it’s been passed down through (hello, generation 1 here. Guilty.), but it also gets worse with each pregnancy. Apparently. I seriously thought our doctor was so full of shit when she said that. But…..it’s playing out to be completely, 100% accurately true. Each child has been more affected than the next. And my oldest son’s health is certainly no picnic. (Okay, yes. He is technically my second oldest. But I don’t know the particulars of the genes my birth son may or may not have inherited from me, despite my best efforts to educate.)

So, yeah. Another fun day for us. This morning’s appointment is stressful and I have no idea what’s going to happen. But I’m excited for their therapist to come back and play with Phoenix on his own. He’s a special boy, that one.

Okay. Well, I’m sitting in the car procrastinating. We should probably head in now. One can only guess what will happen this morning. Wish us luck!

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