Back at the beginning of the year, I talked about how I wanted things to be different – I wanted more spiritual things, I wanted more connection to the community.
Let’s just say that what I got was not anything at all like what I had in mind….but I think it will work out in the end. We’re having quite the year of changes here. Complicated changes, both good and bad. My preschooler has had most of his medical issues resolved, so we’re moving forward now without his long-term nurses – a challenge for all of us. My new baby girl is hanging out in the NICU well past her due date, much like my son did (though hopefully for not nearly as long).
Through it all, though, I feel the presence of the Goddess I generally refer to by the epithet “Big, Dark, and Scary,” one of my two matrons. If there’s one thing she’s known for, it’s breaking old patterns that are no longer useful so that new ones can arise…and that’s certainly how this year has gone thus far. (Don’t get me wrong – it’s not over yet by a long shot, and I’m not expecting it to get any better before the year is up.)
Sometimes it’s her hand on my shoulder, guiding me calmly and gently. Sometimes she’s offered options – this path or that? Sometimes she’s dragging me along kicking and screaming. Have you read the Goddess version of the classic “Footprints in the Sand” poem? It’s “Butt Prints in the Sand,” and as you’ll understand when you read it, I think we’ve had some of that this year too:
One night I had a wondrous dream,
One set of footprints there was seen,
The footprints of the Goddess they were,
But mine were not along the shore.
But then some stranger prints appeared,
and I asked Her, “What have we here?
These prints are large and round and neat,
But much too big to be from feet.”
“My child,” She said in somber tones,
“For miles I carried you alone.
I challenged you to walk in faith,
But you refused and made me wait.”
“You would not learn, you would not grow,
The walk of faith, you would not know,
So I got tired, I got fed up,
And there I dropped you on your butt.
“Because in life, there comes a time,
When one must fight, and one must climb,
When one must rise and take a stand,
Or leave their butt prints in the sand.”
–Author unknown
I don’t quite know where this journey is leading. I know I’ve started working on creating more local community for myself. And working on supporting other families with preemies, now that we have a second one. I know I’m thinking more and more about how to build spirit and faith into everyday things, given our lack of time for more specific rituals. I know I want my kids to have faith and a framework for it to grow on. I’m trying to figure out where this life of ours is headed – what I want it to look like – because the first step in manifesting something is to figure out what you plan to manifest.
I just have to figure out where we’re going and how to get there, and my matron Goddesses are pretty good at pointing the way when I need a helping hand and am ready to do the work.
свети илияПравославни икониThe essay below was written last year for a proposed anthology on chronic illness and spirituality. The anthology fell through, so I started thinking about what to do with this instead. I realized that it rings even more true now with our baby girl in the NICU than it did when I wrote it, and I cried last year writing it. I had posted it on my other blog, but I think it belongs here too.
So, after some consideration, I updated a few things, and I’m posting it here as a prelude to a project I’m working on. I think families like mine – Pagan families of all sorts, with babies currently or formerly in a NICU – need support. We need connections to others. We need to be able to talk about how we navigate this journey, in all its stress and chaos, and come out the other side without losing ourselves. Visit http://paganpreemies.blogspot.com for more information and links to the Parenting Pagan Preemies page on Facebook.
Without further ado, let me tell you about this fishbowl we’ve lived in for the last 3 years….
When your child is ill, the world stops.
When your child has a lasting illness…the world goes on without you, until you figure out how to get back on the ride.
My son, “Acorn,” recently turned three years old. In his first two years, he spent 291 nights in the NICU (neo-natal ICU), and another 14 in the pediatric ICU (those 14 nights were earned in 4 visits to two hospitals, and included an ambulance ride with full lights and sirens). In his third year, we had only one night in the PICU, and one on a regular pediatric floor – a huge improvement.
I went into this journey of parenthood with a deep faith in my Gods and Goddesses. That faith has seen me through thus far, on good days and bad, and helps me to continue to weather the storm. The events of the journey, however, have changed the way I approach the outward aspects of my faith – possibly for good.
Acorn is our miracle child in every sense of the word – a fertility treatment baby, born 13 weeks early and more than 2 weeks behind on growth even then. He’s now 3 years old, running and playing and nearly normal – cognitively above average, about the right size for his age, physical skills are mostly normal, his lungs are improving week by week and month by month, he eats as well as any three year old, and he’s cute as a button. I thank the Gods every single day for him – for all the things that have gone right, for the wisdom of doctors to make hard choices, for the staff that has cared for him, and for the things we’ve learned from him.
When it became obvious that he would be born extremely prematurely, I asked those same Gods to protect him. What I didn’t know was the toll that the experience would take on all of us. I was very much out of the broom closet before parenthood – it was easier for me that way. For Acorn, being at least somewhat in the broom closet has been a necessity, and has been since his birth, and that’s not the kind of Pagan or the type of parent I ever thought I’d be.
The first thing you learn about the ICU is that there is no privacy. Even though our NICU has “private” rooms for the smallest and sickest babies (which Acorn was), the walls were glass, and the nurses came running every time an alarm made a peep, plus anytime they felt like poking their head in. Six families were grouped together in these glass walled cubicles, and there were no secrets – our comings and goings, smiles and tears, all were on display for everyone to see.
Some families posted notes from their ministers on their message boards. Others went so far as to post crosses and pictures of Jesus and Bibles all over their rooms. We felt we could not place anything Pagan in our room to provide us the same comfort – we were dependent on doctors and nurses who, in most cases, would not share our faith – our child’s very life depended on them, and the idea that they might treat him differently if they knew was too much to bear.
As the weeks in the NICU went by, we saw the chaplains a few times. All of them were nuns, except one (and she had sneaked up behind me one day when I was reclining in an easy chair, holding my barely 2 pound baby with his unstable ventilator connection, in a room barely big enough to turn around in, so she might have been a nun too for all I know). They asked if there was anything they could do for us, and I declined – I happen to know that I’m the only Pagan on file in their chaplain’s office, if my nearly decade old file is even still there, with my no-longer-existing phone number from my previous residence. So, we kept an altar at home, and sang Pagan chants softly when we had a few moments without anyone in earshot.
We didn’t have the church support that many of the other families did – no one brought us dinner or asked if we needed groceries or a break or just someone to talk to. The whole situation was extremely isolating.
At 4 ½ months, Acorn went into severe respiratory distress. To remedy the situation, he needed to be on a ventilator again, so he had a tracheostomy (a hole in his neck, with a tube to the outside, to breathe through – often called a trach by families in similar circumstances) – much like Christopher Reeve, after his spinal cord injury. He also had a feeding tube surgically implanted in his belly, and got much of his nutrition through it.
In fact, as weeks became months and we became the longest-resident family on the unit, nurses started sending other families to talk to us, so that we frequently didn’t even have the privacy of being out of earshot of others. I got requests like, tell them your baby was the same size as their’s and is just fine (well, as fine as a child with a tracheostomy, on a ventilator can be). Tell them that they’re not alone, that they’re in good hands. Tell them what a trach is, and how much better it is than the alternatives. I got questions from some of those parents too. How do you do this every day? How do you come in here with a smile? Telling them it was because of my faith only brought more questions. I deftly deflected questions from them about that faith, but could not avoid continued assurances from some families that their God would heal our son. Again, I found myself thinking how different the discussion would have been had we had a pentacle on our message board, or a goddess statue – would it have interfered with our ability to help these other families?
Another thing that I found: When most of your non-working hours are spent in a place where your religion feels unwelcome, it impacts your practice. I had no time at home to celebrate Sabbats and Esbats. I couldn’t celebrate them openly with my child in the hospital. My in-laws kept butting in on weekends I had hoped to get a little time to go to rituals. I couldn’t really celebrate anywhere.
What happened instead was a transformation – my practice became more efficient, more succinct, with fewer tools and props. Meditation and prayers became key tools – what else can you do when trying to hold a fragile child still enough not to dislodge the tubes and wires keeping him alive? Energy work took on new importance too – when your child is too sick for you to even hold him, all you can do is send energy; when others ask for your prayers (even though you aren’t of their faith) and you need to spend time with your own child, energy can still be sent.
Even after finally leaving the hospital, we have nurses in our home every day. None of them are Pagan. As a family, we have taken to keeping our faith quiet, rather than losing good nurses because they’re uncomfortable here. This has caused some issues with Christmas, but for the most part we’ve given up all privacy in favor of having our child cared for properly, because we have no other options. Altars have been moved into bedrooms rather than in the open, rituals are done in the hours no nurse is here, and we’ve been cautious about decorating Acorn’s room with anything identifiably Pagan.
We can’t exactly ask our nurses to attend festivals with us. We don’t have enough nursing hours to leave Acorn at home for a weekend while we go away either, if we want to have enough care during the week to go to work. Even if we could swing a day out to a local festival, we’ve been instructed to avoid large crowds, to help minimize the risk of Acorn catching a cold or the flu, which can be very dangerous for a child with bad lungs. And how do you take a child on oxygen camping – off the ventilator, it’s a little closer to possible, but still not very likely. So, again, we were isolated. I keep my solitary practice, though it’s still usually quick and with few tools, and we do some things as a family, but not much in the way of public or group rituals. Most groups want you to put in a certain amount of time each month, and I just don’t have it to give – not that I wouldn’t love the chance to take time for myself regularly, but that for three years, our schedules have revolved around Acorn, around his therapies and his nursing schedule and his health.
In some ways, I miss those connections with other Pagans more than anything – not in terms of the strength of my faith, but in terms of having people to have conversations about faith with, and in terms of having role models for being a Pagan parent to a little boy who thinks the world is a magickal place.
One day in the not too distant future, we see a time when Acorn will be “just like” other children – when no one meeting him for the first time will suspect the story of his life, unless they know what to look for: the tell-tale scar from a tracheotomy, the careful pronunciation of a child with years of speech therapy behind him, the fleeting terror that crosses his face at the mention of a doctor, the absent minded fidget with his shirt where his feeding tube was.
They won’t have the blessing of watching him learn to open his eyes when he was a week old, or the understanding of how amazing the human body’s capability to heal can be. They’ll just see the person he’s become – the child of the Goddess he’s been all along.
Until then, I lean on my faith, and the deep well of peace it provides, and I enjoy my daily reminder of how magickal the world really is.
Sometimes, life doesn’t turn out as we plan.
In fact, sometimes our intentions and our reality are so far apart they might as well be on different planets.
That’s the sort of situation I’m finding myself in right now. I’m pregnant with my second child, and after our first was born prematurely, we had high hopes for a normal, healthy, low stress, full term sort of pregnancy. Instead, today is day 18 of hospital bedrest for me due to extremely high blood pressure. Given my history with my first pregnancy (severe pre-ecclampsia and HELLP syndrome, at 27 weeks gestation), my medical team decided that staying here for careful monitoring was the way to go.
This is not at all the typical pregnancy experience we’d hoped for.
So, here I sit in my little room. It’s mostly quiet over here in the ante-partum unit, though they started a construction project down the hall in labor & delivery earlier this week, which means a little extra noise off and on during the day.
In many respects, it’s like an expensive retreat center – a minimum number of intrusions from the outside world, and very few things required of me, beyond sitting here. There are lots of encouragements to relax. Meals are brought to me, my bed linens are changed for me, fresh towels are brought each morning. If I want more ice water, or a snack, I just pick up the phone and ask.
It is challenging to remain positive through this experience, but as time goes on, more and more I’m tryring to use this time to my advantage. It’s a time to think, to write, to contemplate all the changes coming to our lives this year, between the new baby and the coming end of many of my son’s medical issues. It’s time to get back into a regular practice of meditation. It’s time to figure out what’s important to me, and what it’s going to take to put those things first. It’s been a good time for fairly mindless hand-work – knitting, mending a few things, and the like.
Mostly, it’s time to take care of me and focus on my needs – to be present and mindful of myself and my relationship with the universe.
I’ve started creating a little altar here, with plans to move it to the NICU when the baby is born – we’re all pretty sure that I will not make it to full term, so at least some NICU time will be in the cards. But at least I have time to think about that – with my first child, things happened so quickly (all things considered) that there wasn’t time to think ahead.
I don’t recommend this as a way to get yourself a spiritual retreat – there are far less expensive alternatives. But I think many of us would benefit from the time to stop and think. Have you considered setting aside a day, or even a weekend, to take a break from the world and focus on you and your spiritual journey?
Born of Water:
Cleansing, Powerful,
Healing, Changing,
I am.
A variety of things are going on here, and I frequently find myself overwhelmed and out of sorts – so much so, that there are days I wake up in the morning from a sound sleep, already touched-out and feeling like I’ve been around too many people in too small a room for too long a time. Since my husband and I share a master bedroom suite bigger than some apartments I’ve had over the years, that’s a problem.
I’ve often said that one of the uses of magickal tools is to help us reach the right ritual state. While I don’t use a lot of tools….I keep them around for times where I need a little extra boost. Lately, the tool I’ve drug out of storage has been the ritual bath – or the ritual shower, as it generally ends up at our house.
One of my primary matrons is tied to flowing water, and a ritual shower, for me, has long been a quick way to connect with Her. Flowing water balances the shields and chakras, bringing fresh energy in and washing away what’s no longer needed. It helps me center, helps me ground – helps me shrug off the excess energy that builds up in that over-stimulated state.
What things do you do to help you find your center when things get rough?
I’ve spent several hours over the last 2 days re-organizing and cleaning up in my meditation room/library. It’s needed it for a while – we emptied the walk-in closet 2 years ago this February, to replace the carpeted floor with hardwood. Much like the state of the books thrown haphazardly on the shelves, my spiritual life (and, really, the rest of my life too) has been a turbulent and jumbled disarray.
I’d like to say that this little step – driven by needing a book I can’t find, for the third time in as many weeks – marks the beginning of changes for the better, but after the last couple of years, I’m loathe to put that idea out there, only to not follow through. Things here are different than they were 3 years ago – it’s not good or bad, just different – and I’ve really struggled to figure out how to fit anything into that new outline.
I have committed to write every other week for a new group project over at thepaganhousehold.com – I’ll be writing on altars and taking submissions of others’ photos of their altars.
I do want to do more writing, more thinking, more meditating, more ritual. Our local community still tends towards disfunctional, and I feel I need to find a functional corner of it to hide in, for my child’s sake. But I’m also tired, and need a break. Here’s hoping this year I find a better way to balance it all.
