Being with my kids 24/7 has me feeling overwhelmed. I love that they get to be educated at home. Riley is thriving beyond my wildest dreams. Seth really enjoys it. It seems to be working for everyone, except maybe me. It is so isolating sometimes. I miss the camaraderie of work, and the paycheck. No matter how much Todd says it is “our” money there is still a power differential.
Anyway….I’m treading water here and getting tired. I’m not as present with the kids as I like to be, and my main objective seems to be how I can keep them occupied so I can get away from them and their constant needs and demands for twenty minutes here, half an hour there. I am not motivated to cook. Our weekly organic produce rots on the counter. If I have to do another dish I am going to scream. Todd and I don’t go out. We don’t do anything social. He is happy to come home and hang out after working hard all week but I’m dying here. I feel so ready to take a job. Perhaps something part-time in the evenings. Nursing would make sense. It is where I can make the most money. I’d have to take my boards again, but whatever. It wasn’t that hard the first time.
And then, perhaps the real reason for the overwhelm. Seth had a sore throat last week. Peering in with a flashlight, the back of his throat actually looked bloody. A couple of days later, it looked more like hamburger meat. This week his tics are really severe. His whole body seizes up. His arm does a wide circular motion. It can take him 20 tries before getting a sentence out, as if his speech is a vinyl record getting stuck on a scratch. The hypothesis with PANDAS is that a strep infection causes an auto-immune response, which somehow attacks the basil ganglia of the brain, the part that controls movement. So you not only have to stop the strep, but also the auto-immune response to it. Seth does not have the truly debilitating psychiatric symptoms often associated with PANDAS but he does have irrational fears and some urinary issues which cause him embarrassment. He fits the criteria for the diagnosis. And if it isn’t PANDAS, what the hell is it?
Our regular pediatrician does not give a shit. He acts as if I have Munchausen by Proxy syndrome because I do not settle for his lackadaisical, “kids outgrow tics.” This isn’t a slight little tic. This is a whole bunch of tics. Some are vocal, some are full body seizing tics (which are constant, Seth’s ribs are sore from it) and it’s not just tics. He is nine and can’t go upstairs by himself, due to fear. He wasn’t always this way.
Luckily we have a specialist who knows about the condition and is doing her best to treat it, but we really have not found the magic bullet yet. Seth’s immune system is screwed up and has been since he was at least three. He missed 33 days of school his kindergarten year.
I find myself resenting women who gripe about how school is closed for this holiday or that and they can’t get any work done. It was never my dream to homeschool and I am not a natural teacher. I fantasize about sending my kids to school, but it was horrible for Riley and school is strep city. And …how could I think of sending Seth? Ticking all over the place and stammering and smelling like pee? No. Not putting him through that. I know it is all relative and so many people have it so much worse than us, but I am tired.
And this is what the overwhelm is really about. My boy is not doing so hot, and I can’t get a minute to catch my breath, and sit with it, and tune into my inner guidance, and really figure out what he needs.
So many good things to report though. Riley got expanders for her upcoming braces and she is doing so well with this metal device attached to her upper palate. She is 100% on board with braces and feels like a “teenager,” and is so full of herself over them. It is a right of passage for her and she is loving it. She is handling all the associated sensory issues like a champ. Better than I would be. She is just growing and thriving in so many ways. Looking at how well she is doing, knowing how far she’s come, I know we can get to the bottom of things with Seth.
We have to.
He is such a good kid. Even with all of this, he’s mostly happy. He’s mostly joyful.
What’s it all about little man? How can I help you?
What does your soul want me to know?