God has a plan. Pick your god, they all seem to have a plan. Or at least that’s what people tell me. The message comes in many flavors. Some of them I have expressed a personal belief in myself. Right now, I am struggling with reconciling all these messages of planning, safety, and purpose with my life right now. I don’t think I would call this a crisis of faith, necessarily, although the phrase has come to mind. It’s more of trying to wrap my mind around the way things are at the moment, and relocating that inner sense of peace and purpose that tells me my beliefs and my reality are aligned, and I am moving again in the right direction.
I’ve been quiet on my blog for a while, but as usual life continues at breakneck speed around here. As of today, I am finishing up my junior year at Woolston-Steen Theological Seminary (with homework that needs doing), working towards my second-degree priesthood for the second time (new tradition), running an online and festival-based business selling the full variety of handmade things I can create, homeschooling my two youngest children, trying to keep my four teens on track with their own schoolwork and life planning, and coordinating and managing medical care and therapies for blindness, autism, allergies, and hypermobility for myself and the other seven people in the family. A couple of months ago, I felt like I’d managed to find a balance for all of this and was feeling that sense of alignment and purpose, moving forward and getting things done.
Then we found out about my husband’s Little Alien Visitor, the giant brain tumor. (“Giant” was the neurotologist’s word, I didn’t make that shit up.) And I feel like every kind of “missing floor” scenario happened all at once, and just won’t stop. Missing the top step, falling down the stairs, waking up from a dream of falling, the memory loss you get from head trauma. I feel like my brain is completely scrambled, and I can’t seem to find my footing. The falling never stops.
We’ve been down the path of new and crazy medical things before, certainly. And every time a new diagnosis comes along, there’s people who try to offer advice that comes across as offensive or at least not at all helpful, like the woman who wanted to sell me her company’s special blend of macronutrients to cure the genetic condition causing my baby’s blindness (puh-lease!!).
What’s really getting to me right now is the comments about planning (and the subtexts that I hear inside them). My Baptist mother-in-law tells my husband that God has a plan, so don’t worry (because God plans on disability and pain and suffering, and let me just state right here that I find that idea abhorrent when combined with the idea of only getting one life on this planet). I hear variations on the same theme from various teachers in seminary: The Universe is a safe place (so death, disability, and permanent brain damage shouldn’t be anything to be afraid of). It doesn’t matter how crazy your life is, we all choose our priorities (as if I can just sort of choose not to get therapy and medical treatment for my children or clean the house or be there for my husband during this or something).
And this is where I get into trying to align my perceptions and feelings right now with my beliefs, because I have espoused the planning concept before, in different ways. I have always believed that we choose the lives we expect to live before we are born, that as non-corporeal spirits we have a wider multidimensional view and have some idea of what we are getting into when we choose a body. I believe that we know the genetics of the body we are coming into, and we know the personalities of the parents we are choosing, and we are actively making those choices either to accomplish personal spiritual developmental goals or to place ourselves in a position to help somebody else with their own goals. So yes, I believe that babies who die shortly before or after birth chose that path, that my husband chose a blind body, that I chose a hypermobile body with a neuro-divergent brain. I also believe that I was destined to meet up with the family that I have, blindness and all, that I knew they were coming my way long before I even met my husband. I don’t presume to know or understand why some of these choices have been made. But I believe that I knew before I was born into this body, and that I will know again after I move on from this life.
So I guess that means my struggle right now is to accept all of that, without being able to understand why. And I can’t seem to get there yet, and maybe that’s why I keep feeling like I’m falling and I can’t ever manage to get up. I don’t do the “denial” stage of grief much, because my logical brain doesn’t see the point. But I am smack dab in the middle of the FUCKING ANGRY AS ALL NINE HELLS stage right now, of wanting to scream and cry and ask “Why” at the top of my lungs, because it’s NOT FAIR, it’s NOT FAIR AT ALL, and how dare anybody plan this shit for us.