It’s a truth telling session, ya’ll.
I am often cheerful and hopeful and Pollyanna about my sons situation but to be true it is so fucking hard sometimes. The appointments and paperwork piles up and all of a sudden I’m drowning and getting a life-saver seems to come through more endless amounts of more paperwork I simply cannot keep track of.
I cannot think clearly. I often miss deadlines and coffee dates. I can barely clean out the dishwasher sometimes. So when this debacle happened you can imagine it was just another thing to chalk up to the side effect of AHC.
I’m not writing this for your sympathy, no, it’s more for my own sense of “shit that happens that you just have to deal with”. Things are harder because of James’ condition. I can’t ignore that. I can’t ignore that I’m not functioning the same either. We missed a letter, which missed a deadline which missed a way to get out of the mess we are in.
I don’t think anyone in their right mind wants to be tangled up in a government department. They are cold. They are long telephone waits and form letters. They are zero empathy. No one really cares. I am sure it has to be that way. I can only imagine the thousands of other stressed out mothers who let mail pile up at their kitchen counters who call desperately for some help and are shunned or turned away because they didn’t call or do that thing they needed to do in 30 days of some date.
Ya’ll this sucks and it’s been a lesson to me. Even when I’m in the BS, when things are hard and I can’t think straight, I have to try to think Straight. Because once you let something go, no one is going to be around to help you. It’s all on you.
I pray for those families who are in worse shape than I am dealing with this kind of thing. Good Lord how do they cope? I’m so lucky to have a great husband and family (and community) that ultimately when all the tears are shed and the curses screamed, I’m going to be ok. I really truly am. Even as I get these words out, I’m breathing a little deeper and fuming a little less – heck maybe I’ll even knit a fucking row.
It just sucks right now. AHC sucks. Rare disease sucks. Being on the fringe sucks. Asking for help sucks. Deal with it, right?
Deal with it.