The 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 Leaf in the NICU than it did when I wrote it, and I cried last year writing it.
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. Next week I should have the remaining details ironed out, and I will post them at that time.
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.
