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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.
(Part of this is a rewriting of a previous post that can be found here. I have updated my writing on Loki and added some on Aphrodite.)
Loki started out Calling me quietly. His name would come into my head, especially in times of difficulty or when I felt lost, with a compulsion to look Him up and learn more. I would read a few stories or websites, and then dismiss it as something I didn’t need to pursue. This went on for several years, each Call a little louder than the last. It culminated in early 2013 at ConVocation, when I felt the urge to attend a workshop on Loki and Trickster. The feeling that I got during that workshop was akin to the way you feel upon getting the solution to a tough riddle or puzzle, one that has bothered you for years. I had been looking at Him all wrong, and once I got the angle right, everything seemed obvious. My whole life, which always felt like one long series of extremely unusual events, was just preparation for serving Him openly and directly.
That very weekend, I acknowledged Loki’s Call and accepted Him as my patron. The next twelve months were a period of reflection, introspection, and revelation for me as I worked through His charge to Know Myself. I learned to see my life and my self through a new lens, one cleaned of the foggy filter of perfectionism and trying to fit in. I learned to see all the intricate ways the randomness in my life is connected, how so many chance things have converged on my path. I spent time studying both the religion and culture of my ancestors, in an attempt to better connect with this god of my ancestors. I even took on teaching a class on the Vikings in our homeschool co-op, forcing me to delve deeper to stay a step ahead of my students (often at 1 a.m. the night before the next class).
Essentially a year and a day passed, and I found myself again being nudged by Loki. Except with Loki it doesn’t really come as a nudge; it comes as spilled drinks and broken cigarettes, random jukeboxes and fritzy elevators, machines that don’t work, stumbles, power outages, loud noises in the silence. I can be dense sometimes, but I did finally realize He was trying to get my attention, so I asked a close friend to do a reading for me to shed some more light. The impression that I took away from that complicated reading was that the first year was analogous to my postulancy with Loki, my year of learning and thinking and looking around through these new eyes. “Now,” He said, “it’s time to step it up, move forward.” There is no time with Him for sitting around letting the same old same old go on every day.
It was a hard place to be in. I am already in a fringe religion, and here I was being Called upon by an even fringier god to light my torch for Him in this world, to stop observing from the sidelines and be that agent for change, be the one to shake things up, be the one to be loud and proud. This was not a request that I abandon my path toward priesthood in the Craft, but rather that I take a step up in working for Him and owning His patronage in my dealings with the world. I had a strong feeling that an Oath was wanted, but I wasn’t ready for it yet. I knew how serious an Oath was with the Norse gods, with any gods really. I knew that anything could happen once that Oath was given.
I did smaller things for a while. I wrote a prayer for Him and added it to my daily devotions. I started studying my ancestral crafts, making them also a part of my daily practice (and how “lucky” for me to finally find something to use as a nalbinding needle the very weekend I got that nudge!). I bought lottery tickets for my altar. I kept my mind open to His voice and paid attention when I noticed it, heeding nudges as simple and silly as, “Let your hair down,” or a little bigger like, “Bring your music back and share it with the world.” The negative nudges mostly stopped (except the trouble with machinery) and positive ones started to flow again, the serendipitous encounters, the chance findings of lost or needed things.
It took a couple of years, years of further upheaval in my life, both mundane and magickal, but I finally took the Oath in 2016. I swore to be His now and always, and marked myself with a tattoo in a place where I see it every day, so that I will never forget. I am Loki’s boundary priestess. It is part of my Great Work, to be that reminder to others of things unseen, things overlooked, assumptions too quickly made, processes that need tweaking, bugs in the system. Knowing this helps. I still live in that stream of craziness, but most of the time I can remember that I’m still just doing my job as Loki’s priestess, whether pointing out the holes in a first aid system by having actual panic attacks at a festival, or pointing out the holes in an educational system by having kids that don’t fit into government boxes.
Now I am also working with Aphrodite. She came to me through a certain turn of events, and She was much more forceful about announcing Her presence. When I look back at my life, though, again I can see a place for Her, a void that She has come to help fill and smooth over, a way She can help make my life a little more healthy and whole.
I see myself getting distracted while writing this. Working with Her is going to touch on things I’ve been skirting my entire life. She scares me. Her energy and power scare me, I’ve felt them and it still scares me.
I know about as much about Aphrodite as I did about Loki when I first acknowledged His Call. I know the myths. I’ve called upon her for spells. I worked more closely with her for a few weeks here and there. I’ll be working with Her as closely as I work with Loki for the next year or so, and I expect to learn much, much more.
Aphrodite is love, and sex, and passion, and sensuality, and lust. These are all things that I have believed in since I hit puberty, things that I advocate for. I identify as bisexual and polyamorous. I believe strongly in the logistical benefits of having more than two adults in a household, especially a large family with lots of children. I’ve always loved the concept of a line marriage. I don’t believe that my love for person A is in any way diminished by my love for person B, whether I’m talking about loving other adults or the love I have for my own children.
And I always wanted to be Maureen when I grew up, wanted to be that woman with enough sex drive for two or three women instead of barely enough for a quarter, who was never too tired or too sick, who didn’t actually get headaches from orgasms or have GI problems that made her too shy to let anybody near her or partially dislocate her hips during sex. I kept waiting for it. I heard somewhere when I was twenty or so that a woman’s sex drive peaks in her 30’s, so I thought, yay, once I get to my thirties it’ll happen! Yeah, that ship’s sailed and never even saw the fucking port.
When Aphrodite came for me, She hit me harder than Loki ever did. It was like getting bowled over by a sexual tidal wave. No other analogy comes close. It felt a little like going crazy, like some other personality had moved into my head and altered my drives. And this happened before I ever called on Her for working, before I had any clue that I was to be Hers for the foreseable future. And like Loki, when I realized what was happening, it was like solving a riddle, and everything suddenly made sense.
And I was scared. So scared that I haven’t invoked Her for months. She’s kept a place on my altar, and a place in my rituals, but real work and communion? That feeling of being taken over still scares me. And yet, like I said, I can see this void, a longing in my heart that I know she will fill.
Right now, I feel a bit like I did before pledging to Loki. I felt then like I was standing on the edge of a cliff, and I was being asked to jump off. It takes so much courage to take that leap, and I don’t think it gets any easier the more times I do it. I’ll jump. I’ll jump off the cliffs into the deep blue water, and dive deep, and take a long, long cruise with Aphrodite. And then in a year or two, perhaps I’ll look back and see how silly it was to be scared, and how low that cliff really was.
I will open this by saying that I’ve been told I was overweight or obese my entire life. My whole life, all the way back to junior high. My mom had me in Weight Watchers and special exercise programs and therapy programs for fat kids as a teenager. I learned all the height and weight charts and everything they had to say. I’ve known ever since I was 13 that I was supposed to weigh 135 pounds, no more no less, and until I did I would be considered unhealthy and a health catastrophe waiting to happen.
I’ve also known that I don’t have a typical woman’s body. My bony wrists are so big that I can’t buy bracelets and watches for myself off the women’s jewelry racks. My bony fingers are so big that I need men’s sizes in rings. My bony ankles and feet are at the top end of women’s shoe sizing, and so wide that I can’t even buy shoes in the regular stores anymore, especially not with the arthritis in my feet. I have to make broad back adjustments in any clothing I sew, and jackets and coats never fit me off the rack because of this.
As an adult, my weight has cycled up and down quite a bit, but I have never once been below 170 pounds, not since I was 15 or 16 years old. I think I was around 210 when I got married.
Mostly I’ve bounced around between 170 and 210. I think I was around 175 when I took this picture, and I wasn’t very active at all, not doing any real exercise outside of housework and child care:
Here’s one of me when I was probably 210 or so, near the end of my running period. At this point I was running about 40 miles a week and doing lots of strength training, so the shape of my body and my strength were very, very different from when I was 210 when I got married.
Somehow over the course of the years, I started to lose that belief in the height/weight charts, and the BMI numbers that succeeded them. I could see that they didn’t work quite right for me. I spent time researching other ways to measure my health. I could see that I was a runner who could do 12 miles at a stretch and then drop and give you 20 pushups, and yet my weight wasn’t what the weight fanatics said it should be. I found alternate ways to measure body composition, using a variety of body measurements, and found that at the peak of my running and strength training, my body was right about at an ideal 26% body fat even though my weight was over 200 lbs.
These days I’ve gotten back up to the large end. My weight is between 230 and 240, but my clothing size is about the same or smaller as when I got married, about 18/20. I’ve let myself go, even though I have some residual muscle hanging around from the running days. I stopped exercising almost entirely when I had to stop running. My pain levels just kept going up, and I kept thinking a little more rest would do the trick, until I realized this past winter that it had been almost three years, and now I was having trouble getting up when I sat on the floor.
I saw my blood pressure going up, and I had several nudges from the Goddess to wake up and start taking care of myself again. So in April I started walking every day, and in June I started up my strength training again. I don’t feel like I’ve gotten very far. My shape is the same, and my weight is the same, and my pain is about the same. But I can feel the functional difference when I get up off the floor, or get the bug to clean the house. Life is getting just a little bit easier with every week, and that’s good.
Last week, I participated in a medical research study. They paid me $20 to poke and measure me for a couple of hours as part of a study on the long-term effects of chronic illness on overall health. During this, I got the chance to step up onto a very nice high-tech body composition scale.
This wasn’t your ordinary bathroom scale, with the little pads you put your feet on. Those don’t do much better than height/weight charts, really. I’ve owned a couple, and I’ve been put on them in doctor’s offices and weigh clinics. The best number I ever got out of one of those was probably a projected ideal weight of 145, which is only a little better than that 135 height/weight number.
This high-tech scale was something else entirely. It didn’t just have feet pads, it had something for my hands to hold on to as well, and according to the printouts it measured each quadrant of my body as well as the overall total. Can you guess what it said my current ideal body weight would be, the weight that would bring me back to 26% fat if nothing changed in my muscle mass?
173 pounds. That’s with me feeling out of shape, with a lower than ideal amount of muscle on my body. Still, it says my ideal weight is 173 pounds, and that’s if I did absolutely nothing else to get stronger and more functionally fit, and just starved my body to drop fat.
I feel so vindicated now. I feel very sad for teenage me, thinking I was fat when I wasn’t, letting that drive me into giving up so many times and letting my body get truly unhealthy because I still had it in my head that the number on the scale was everything. I feel even more sad for all the other girls and women, and men, out there who think this number on the scale is everything still, who do amazing things for their health and fitness and then eventually throw it all away because of the frakking number on the scale.
But I feel very happy to see that I was right to think that I was healthy at 210 a few years ago, and now I know for sure that it’s okay to let that thinking continue and nurture it and let it grow as my body grows stronger again. And this time, I will not be ashamed of my clothing size or the number on the scale, dammit! I have a strong body, a beautiful body, and this is the shape it comes in!
I was asked today what my purpose was in attending seminary, and how long I would be in school there. At first I didn’t really have an answer. I know that I sort of joined on a whim at first, following a friend because it sounded like fun. I really had to think about it today, and the question lodged in the back of my mind until I got it sorted.
I think it’s an important question, considering how much of my time is being spent on this effort. As of today, I am spending 5 hours a week just in class, each class with it’s own list of readings and assignments, plus another hour in volunteer meetings for the organization that produce their own workload. I’m working along an initiatory track as well, which means additional meetings and assignments from my teacher. To give proper attention to all of it would probably mean 5 hours of study or class every day, an unattainable goal on top of everything else already on my plate, and with a body that likes to knock me down whenever I try to do too much.
If I had to boil my purpose down to a single statement right now, my goal is to become the best priestess I can be. All of the other things are linked to that one purpose: attaining Third Degree, acquiring a bachelor’s or even master’s degree, acquiring the skills and experience needed to start a church when we move back to Texas. It all goes back to learning as much as I can to practice the Craft to the best of my ability.
Mastery of the Craft is something that I have wanted ever since my teens, but I have always found it difficult to pursue, feeling trapped as a solitary for decades with very little contact with others who shared my path. When I finally connected with a church, I joined and participated 100%. When I was offered an initiatory path in that tradition, I only waited about 30 seconds (ok, maybe a day or two) before accepting. As soon as I found out about the seminary and determined that it was something I could do, that it fell within my budget and location requirements, I signed up, right in the middle of their academic year and ready to jump into the deep end head first. It’s a good thing that I no longer have any nurslings or diapers to tend, that the work to get A’Kos is over with, and that most of my kids are able to pull their own weight around the house!
So far every step I’ve taken has indeed led me farther down the path that I feel is integral to my life’s work this incarnation. With every move, I have stretched my personal boundaries and abilities, and I have increased my knowledge and confidence. Looking back, I can see each part flowing logically into the next. The road has had bends and hills and the occasional crevasse, but it has been a single road.
Right now, it is very busy. But I can feel the energy of the work I am doing, I can feel the pace and rhythm of the learning and the connection with my fellow students, the way all my classes mesh together. Sure, it’s possible that I could back off and just do one class at a time, one thing at a time. Spend an hour a day instead of three or five. But right now, I think I would lose a vital piece of what I am learning and experiencing. So I’ll keep on keeping on, and just remember to make sure I pay enough attention to my family while I do.
I posted once about hypermobility syndrome after I first met with my current rheumatologist back in 2013, but I never followed up on it. Now I’ve been living with the diagnosis and integrating it into my view of myself for almost three years, and because a couple of my friends have the same condition I feel like everybody knows what this is and what it does. Tonight I was reminded that this is not the case, that as much as it feels like normal and common sense to me and my kids because we live with it, others still need to have it explained. So here’s a fresh explanation, with some new insights.
I’ll say up front that my official diagnosis from the rheumatologist is systemic Joint Hypermobility Syndrome (JHS) with spinal bifida occulta and arthritis in my spine, hips, knees, and feet. Her policy is not to use an Ehlers-Danlos Syndrome (EDS) diagnostic code unless she has a positive genetic test, which she generally doesn’t order because it’s expensive and doesn’t serve much purpose unless you have a dangerous subtype, and may just be a false negative if you have a mutation that has not yet been identified. However, the clinical differences between JHS and EDS type 3 are minimal, and many doctors in the field believe there is no real difference.
My children do not have an “official” diagnosis at all. My own rheumatologist cannot see my children because they are children, for liability reasons. The nearest place we could go that would be familiar with this syndrome, especially in children, is in Ohio, and it just hasn’t been worth it to make such a huge effort and expense for a piece of paper. There is no treatment for EDS, no cure, only awareness, the ability to better care for our bodies so they don’t wear out so fast, something to tell doctors and nurses before the anesthesia fails and the veins blow out and the belly incisions bust open. After identifying so many of the same symptoms in my children, and especially after seeing them struggle with dislocated/subluxated joints and finding out at least one of them also has spina bifida occulta, I am feeling more strongly than before that seeking out at least the genetic testing might be worthwhile, both for genetic counseling for my children and giving them a better ability to anticipate how their bodies will react to things in the future.
All that being said, part of the point of this post was to provide an explanation for how EDS affects our bodies. It is not limited to the joints, and it is not limited to extreme crazy contortionist tricks. Here is a list of ways in which EDS affects my body (not necessary exhaustive, because there are so many that sometimes I forget some), and most of these symptoms I have now seen also in one or more of my children:
- spina bifida occulta
- frequent joint sprains and unexplained sore joints
- random or easily produced joint dislocations and subluxations, including toes, feet, ankles, hips, shoulders, and jaws (I can dislocate my toes by getting out of the van wrong, my ankles by stretching, my shoulder by picking up a heavy bag, my jaw by yawning)
- anesthesia that is ineffective or resolves (wears off) too quickly, because it leaks away from where it was placed
- I love to eat salty foods, much saltier than most people like them, which is one way my body tries to keep my blood pressure from dropping too low.
- orthostatic hypotension, or I almost pass out when I stand up because my blood pressure can’t adjust fast enough
- I can crack my ankles just like I can crack my knuckles
- a heartbeat that fluctuates with my breathing, with frequent episodes of palpitations and a history of unexplained murmurs
- stretch marks on top of stretch marks, from just existing, from growing boobs, from growing into a woman, from having kids again and again and again…not one or two, but entire body parts completely covered in them
- keratosis pilari, that bumpy skin on the back of my arms
- severe nearsightedness
- poor wound healing, with dehiscence in incisions when they should already be closed
- incompetent cervix in pregnancy
- being able to easily squat, being more comfortable sitting on the floor than in a chair
- tendon and nerve issues like plantar fasciitis and carpal tunnel syndrome starting in my teens
- severe recurring idiopathic headaches
- pelvic organ prolapse
- creaks and bumps when my joints move starting in my teens
- poor circulation in my feet
- Reynaud’s syndrome causing blood loss and pain in my hands and feet in the cold
- constant back pain and tight muscles around my lower back
- idiopathic blood issues, including thrombocytopenia (low platelets), petechiae (pinpoint spots of bleeding, especially after pressure on my skin like carrying a heavy bag), borderline anemia, easy bruising, and a tendency to bleed out in surgery
- flat, pronating feet
- early-onset of tissue paper skin
- idiopathic mouth sores
- reflux and irritable bowel syndrome
- extreme sensitivity to stomach irritation from nSAIDs like Advil (which is why I make my own)
- hard-to-place and blown IVs
- permanent hair dye washes out in weeks
- symptoms of Mast Cell Activation Disease (MCAD), especially dermatographia and other strange allergy-like reactions
- stretchy skin with a velvety texture, especially in areas that are under constant stress or friction
- severe, almost debilitating menorrhagia
- translucent skin, so you can see all the veins
As you can see, this runs the gamut from weird but no big deal to things that can ruin your life (anesthesia failing during surgery can do that). Sometimes paying attention to the little things, like that shoulder that keeps popping out during cheer practice, and taking better care can prevent total disability at a relatively young age. Hopefully my kids can keep it going longer than I did.
I am getting achy again as winter creeps in, and I am tired of feeling like everything takes forever around here, so I am going back to an old tactic I used as a kid that works much better with today’s tech: the timer! I’m going to race myself against the timer and see how I do, see just how long things really take if I apply myself.
My current list of daily essentials looks like this:
- Brush out my hair
- Shower and dress to shoes
- Brush my teeth
- Clean the downstairs bathroom
- Reboot the laundry
- Clean the upstairs bathroom
- Morning kitchen blessing (clear and wipe tables and counters and stove, reboot dishes, reboot recycling)
- Clean the litterboxes
Today’s essentials took 1:10 to complete. Exceptions include writing a quick email to somebody before I forgot, emptying the household trash cans (normally a weekly chore), the first time cleaning the upstairs bathroom in quite a while, and stopping the timer before balancing the checkbook (something I want to include in the future). I think in the future the timed run ought to include the things I do before I eat (making coffee, walking A’Kos, handing out medicine to animals and eyedrops to Kender, feeding the animals, tending my altar) with the timer stopped while I eat.
This went really well. Competition is good, and anything that gets the chores out of my way faster is a good thing.
Did I earn a knitting break?
People die every day. They are shot, stabbed, strangled, or blown to bits. They die from natural disasters and crappy engineering and war. They die from operator error, negligence, and neglect. They die from disease, from old age, from wearing their body out a little faster than others.
I’m not sure what makes a death, or even just violence, newsworthy, not just evening news but internet news. It’s not just violence, because people are murdered every day and don’t get reported on, yet my friend’s murder made international internet news when it happened. Sometimes it’s numbers, but there doesn’t seem to be a hard threshold, with some people categorizing mass murders as anything over 4 while other outlets don’t seem interested unless the death toll is much higher. Sometimes one black person in a wealthy country makes headlines, and sometimes a hundred white people in another country are forgotten. One person dying of cancer is just another funeral, of no interest outside her family and friends, but if 10,001 people died of cancer one year and 10,000 the year before, there will be international headlines bemoaning the epidemic and telling us not to eat red dye number 5, or bacon, or anything that ever touched the wrong kind of plastic.
Wibbly wobbly standards of interest and panic.
But when death does make internet news, my Facebook feed always follows a very predictable pattern, as do I to be honest.
First, somebody vaguebooks about something. They are so sorry for a city, or praying for a family, or maybe they’re just in total shock with nothing to indicate whether it is a 7.2 earthquake in Tokyo or another UM/MSU game. It starts as one post, then gradually picks up steam, allowing me to rule out football depending on the geographical spread. Eventually, somebody will post a news story, or maybe they won’t and I’ll get all impatient and Google it myself. I don’t participate in this phase unless I learn something before seeing it on Facebook, which is pretty rare since I don’t watch or listen to news channels anymore.
Once the news stories start, they snowball quickly. Everybody has their own favorite outlets to share, and every post is topped by comments about prayer, courage, shock, pain, fear, the whose range of emotions. When this happens, I start looking for the exceptions. I want to see what is different, who is being a nutcase, what the radical ideas are. Who is sharing new pieces of information, and what are their sources? I try not to participate in this phase, either. If I am personally connected to the tragedy, I am busy coping and don’t want to risk sharing anything without permission. If I’m not connected, I don’t really trust anything I hear anyway, so I don’t want to spread it, but if I see something unusual and interesting I may boost it.
Somewhere in this area, the solidarity starts. Everybody starts to identify with the victim(s). They start saying they are that person, they are from that city or country, they believe in that cause. This is where Facebook profile pictures start to get changed, and this is also where things start to get ugly. It becomes a gang situation. You’re either with them or against them, and everybody can tell which gang you belong to by the colors you sport. Now you’re not allowed to stand aside. Everybody starts making assumptions based on your profile picture, on whether or not you’ve shared stories, or whether or not you pray.
And now the fighting starts, and my Facebook feed starts to look like the aftermath of Thanksgiving. The profile pic contingent is loudly crying and waving their flags, saying nobody understands. Somebody is telling them it’s their own fault, they could have prevented the whole thing. Two or three people are shouting from the other side of the room about how their feelings were hurt just last week, and why didn’t anybody pay attention to them? Mom and Grandma start praying for everybody and offering up conciliatory pie, while Dad and Uncle Joe discuss the statistics involved and wartime strategies for getting rid of all the culprits, presumed guilty up front of course.
And I’m just going to head into the living room and pull out my knitting, because getting involved in the argument myself isn’t going to do anything to help anybody.
I can’t fix the evil in the world. I can’t even be too sad about all of it, because life would no longer be worth living without joy. So my task is to bring some beauty and love into the world. That’s what I can do, and that’s what I can focus on. If you want some happiness, I’m here to help. See this beautiful thing I’m working on this week?
I remember 16 years ago.
At this time, dinnertime 16 years ago, I was barely able to stand, afraid the hole that stretched across the bottom of my belly would rip open and spill my guts out if I did. I had only just returned to my hospital room after my first trip to visit my babies. I was still groggy from my two days on magnesium sulfate and a surgery that ended without anesthesia and the aftereffects of a failed spinal.
It was after sunset when I made that visit. I remember the darkness outside the windows, and the super bright bili lights over each open warmer made an island of light at each baby’s bed. I remember being wheeled in to the room, rolling from one island of lights and beeps to the next.
Their heads had little knit caps on, their eyes were covered with shields to protect them from the lights, and the tubes and connectors for the high-frequency ventilators covered their mouths, noses, and cheeks. IV lines ran into the stumps of their umbilical cords, a silver pad on their chests monitored their temperature, and a pad wrapped around their feet measured the oxygen levels in their blood. Their red skin had been covered with lotion to stop it from drying out. They had no nipples, and their ears were just flaps of skin with no cartilage. If I touched my finger to a palm, the only amount of touching I could do, their fingers would grasp, reaching barely halfway around my finger.
I could see their chins, and I remember even at that early age being able to see my grandmother in David’s chin.
It would be two more weeks before I would be allowed to hold them, the nurses carefully transferring one baby from the warmer to my waiting chest, a two man team required to move the baby and the CPAP tubes, the feeding lines, the monitor lines, a third nurse waiting with a warm blanket to cover us both. Two more weeks before I could change a diaper. Over a month before I could even try to nurse them. Three months before I would be able to bring them home, away from the beeps and the tubes and the nosey nurses and infuriating doctors. (Yes, I also know they saved my babies’ lives, but if you have never been the NICU parent, you don’t know what it feels like to have absolutely no say in the care of your newborn babies, to be reprimanded for so much as touching them without permission, to only get to talk to the doctors because they’re participating in a research study about communication, to be ordered to leave your children’s sides because the doctors are coming.)
I read something recently that explained human menstruation as a strategy that evolved to weed out our embryos, the thick lining of the uterus intended not to nourish a baby but to make it as hard as possible for each baby to connect their placenta. I have incredibly heavy periods, so my first thought was that all my children are rock stars just to make it past that first, most hostile barrier to life.
My first children also had to pass a second, even more dangerous proving ground when my uterus said, “Three?! That’s over the occupancy limit! You’re evicted!” and dumped them into the world three months early, unable to breathe, unable to eat, unable to maintain their own body temperature, without functional eyes or fully-formed skin. Each baby individually had roughly 70% chance of staying alive at all, and only a 30% chance of remaining free from disability, free from brain bleeds and retinopathy of prematurity and necrosis of the bowels.
As a group, we had only a 34% chance of bringing all three of our babies home alive, and almost no chance of bringing them home entirely free from disability.
My little superstars beat those long odds. They came home around their due date, healthy and whole. Today, I have three 16-year-olds. They participate in cheerleading, parkour, and wrestling. They play games and draw and write and sew, and two are even learning to drive. They are smart and determined, each of them with their own unique interests and friends. They are perilously close to leaving my home, just as they left my body 16 years ago, and I know they will do well in the world.
Rock on, Brenden, Tamara, and David. You are amazing. Happy 16th birthday to you all!
I just left everybody hanging on our road trip, didn’t I? Life gets in the way sometimes, but I will get the whole trip posted eventually. Here’s part two:
We’ve made road trips by camping as a family before, but that was many years ago. We’ve camped more recently as a family using a popup camper, but not our own camper. This was our first long trip with A’Kos, our first trip with our new popup, and our first long vacation in many years. Essentially, it was a shakedown cruise rolled into the real thing.
Our first day was set to be 8 hours of driving: 6 to get to the nearest Chuy’s, plus a little less than 2 more to our campground. We got up early, packed as a team, and hit the road at 9:30.
We got to Chuy’s at 7:00pm.
This became the theme of our whole trip. We hit our first traffic jam just south of Toledo, only two hours from home. The kids enjoyed the pretty mosque we got to stare at, but it didn’t outweigh the standstill traffic.
We hit traffic in Dayton. We hit traffic in Cincinnati. We hit traffic in Lexington. We hit traffic in Chattanooga. We hit traffic in Atlanta. We drove pretty hard, keeping steps to a minimum, eating lunch in the van, constantly trying to regain ground lost to traffic jams.
This is an exhausting way to travel, but there is no way around it when you have a deadline.
We got to Chuy’s in time for dinner. If you are from the Austin, Texas, area, you know exactly what I’m talking about. If not, it is hard to explain, but I’ll try. Chuy’s is a TexMex restaurant founded in Austin in the early 80’s. For most of the next twenty years, there were only a handful of locations, mostly in Austin. The food is very much the epitome of TexMex, food that is near and dear to the heart of any Texan: chips and queso, margaritas, burritos, handmade tortillas, soft and fluffy sopapillas, all of it just about the best of its kind to be found anywhere. This combines with a funky, eclectic atmosphere that is pure Austin weirdness: ceilings covered in hubcaps, strange artwork and pictures of dogs on the walls, shrines to Elvis Presley, cheap 50’s-style tables and chairs.
Dinner wait lines at Chuy’s have always been over an hour at peak dinner time in Austin. When I was a kid, we would drive the 30 miles into town on Sundays after church, eat lunch at Chuy’s #2, then hit Sam’s before heading back home. It was a tradition, one that I sorely missed when I moved out of state. I have been watching as Chuy’s has expanded across the country in the past five or ten years, but the closest location to our home is still six hours away. It’s been several years since I last went to Texas and got to eat some Chuy’s. This visit was everything I’ve been waiting for.
Camping and the rest of our trip? Not so much. We rolled in both nights after dark. We forgot that you have to pull up the stove and sink in order to have power inside. We forgot to buy and bring a water hose. We forgot a can opener. We lost all of the milk we tried to bring along to spoilage. We didn’t pack quite enough bedding for everyone. We forgot measuring cups. We got caught in a hurricane-strength downpour not once but twice, rain and wind strong enough to get into our main storage bin and soak all our groceries. We spent our second night in the gnat capital of the world (no kidding, there was even a sign at the front desk talking about the gnats). We would roll out in the morning with storage bins unlatched, steps still out, children still needing bathrooms. We seemed to be sharing I-75 with the entire east coast, and we had to pass one army munitions caravan three times before we finally pulled ahead of them. Our second day of driving turned from six hours into ten.
We got there, though. I had some help from my new apprentice drivers, Brenden and Tamara. Tamara earned her rush hour creds in Atlanta, and Brenden discovered just how annoying it was to be on the receiving end of seat back kicking. We rolled in through the daily Florida afternoon showers, and were greeted in our clean condo by towel swans.
Our incentive for getting in early enough on Saturday was a visit to Disney Quest, a five-story arcade where all the games are free. This was definitely an attraction high on the must-see list for the kids, and they thoroughly enjoyed it. Kender didn’t do much, since it was overwhelmingly noisy, so he and Brian spent most of the evening hanging out with milkshakes in the food floor. The rest of the kids had a blast, running from floor to floor. There were bumper cars with cannons, a build-your-own roller coaster, whitewater rafting, 3-D pirate battles, and more, with tons and tons of arcade games on every floor, all coin-free.
A great week was still to come.