Saturday, December 31, 2011

Books for Pagan Kids

I recently ran across a neat website, - they're an online indie bookstore that specializes in, as their name says, books for Pagan children. While they don't have every book I've found for Pagan kids, they have a ton of books I'd never heard of, which is quite cool, along with games & other Pagan-y things.

It's nice not having to try to figure out what might be Pagan and what might be overtly Christian, which is frequently what happens when I'm looking for books for Acorn and Leaf online. I don't mind a few minor references here and there, but clearly we need opportunities to teach our kids our beliefs and values, because so much of the mainstream world (most caregivers, teachers, playgroups, and the like) is going to teach them about Christianity - at least, the generic version of it.

There still aren't many books for the 0-3 age range here, but I'm having a hard time finding those anywhere. Sigh.


Obligatory disclaimer: affiliate link here, but the opinions are mine. I get money if you buy stuff following that link - given the amount I'm spending on gas to head to the hospital every day, every penny helps!

Wednesday, December 28, 2011

New Digs - Not So Wordless Wednesday

Oh, there's so much to say, and I haven't been at a real computer with a real keyboard in days, and I don't even know where to begin.

Last Friday (Christmas eve eve) at around 8 pm, I got a call from our hospital that the transfer for Leaf to a bigger hospital had been sorted out...and was happening within the hour. Thus began a whirlwind of helicopters and new doctors and nurses and new rules and new places and just...chaos.

At any rate,  we've moved to University of Michigan - CS Mott Children's Hospital. The hospital is brand new - they moved from the old hospital on December 4th. The hospital is nice - really nice - even the public bathrooms on the PICU floor are nice - showers are included in each unisex bath for parents who are staying with their kids:

The way they handle breastmilk makes me happy. The family lounge is well stocked and set up for people to actually use. The elevators talk, which Acorn thinks is the funniest thing ever. The cafe has decent food. Parking is inexpensive ($2/day max for patients and visitors with validated parking tickets). The views from most of the patient windows are stunning - here's ours:

Leaf got to ride in a helicopter, because they figured moving a ventilated patient from a PICU to a PICU was not something to do on surface streets. The flight crew brought her a pair of wings and a bear dressed in a UofM flight suit:

We're just waiting for a bed on the vent unit now, which they're hoping to have for us on Monday. We are also planning a meeting with the vent team for next week to get things lined up and a plan to get Leaf back home. Until then, we're just hanging out in our nifty high tech corner of one of the PICU bays:

At the rate we're going, I'll likely not be posting much the next few weeks. It's an hour drive one way, and while we're still in the PICU, Acorn and I will be out there most afternoons. We're debating how to handle things once we move to the floor, because I suspect Leaf will need more parental involvement. Our friend K has graciously offered crash space at her house, just a few minutes away, and has offered to come keep Acorn busy from time to time, since she works just a few blocks away in a research lab on campus. We still have to clean out her bedroom at home too, and take care of Acorn's appointments and a ton of paperwork for both kids, and getting to a computer that I can actually type on has been a heck of a challenge.

Hope you're having a wonderful holiday season!

Friday, December 23, 2011

Prompt: Winter Holidays and Family

From Pagan Blog Prompts:
This time of year, there are many different celebrations going on, most often ones that bring family close together. While it can be nice to see everyone again, it can also be stressful, when your family doesn't feel the same way about things as you do.

So, how do you deal with them? Do you simply avoid all talk of religion, even though the holidays can be very religious? Or perhaps it's just easier to avoid family all together....

If your family actually believes as you do, then perhaps these holiday gatherings aren't tough at all. Please, share with us how your Pagan winter family gathering go...

We generally try to avoid discussing religion no matter what the occasion for a family gathering - we have several older relatives who we've been told never to tell anything about anything.

What to do with the family is complicated here not so much by religion but by our kids, since most of our family gatherings are on the secular end of the holidays. We haven't been out of town to see my side of the family for a holiday since 2007, because we felt travel with Acorn was too difficult (and too likely to expose him to germs). We had been meaning to travel this year, but Leaf's stay in the PICU pretty much brought that to a halt. Whether we will travel with her now that she has a trach remains to be seen, and is dependent on her stability.

You'd think that after 11 years of marriage (and 15 years together) we'd be comfortable with each other's family's traditions ,but we're still working through that as well. What gifts people choose, what foods they have, how they plan for a holiday dinner - all of these things are things we're still trying to get the hang of.

And then we have to add in sorting out our own traditions...and it just makes it a complicated mess.

Thursday, December 22, 2011

Blessed Solstice, One and All

Happy Yule! Today is the solstice, and though our celebration here has been pretty minimal, I hope you've all had a great time.

For those not reading, I've posted over there this week on Zen and the Goddess, and on using magickal workings on one's inner critic - pop over there and check it out.

One of my projects for January, assuming life settles down finally, is to put together an ebook on planning family Sabbats. I'm also working on a submission for Pagan Writers Press's Pagan Birth Stories anthology.

Enjoy the rest of your holiday season - I'll be doing battle with hospitals, doctors, and the state's department of human services. No rest for the wicked, I guess.

Tuesday, December 20, 2011

Frame of Reference

Talking with others about how people see kids like mine - kids with substantial medical issues, medically fragile kids, complicated kids - it's been clear that part of the problem is just that the rest of the world has no frame of reference at all.

Here's the reason. People think in very simple terms - 3 boxes. You're either healthy, sort of sick (fever/cough/rash, lay around on the couch a couple days), or sick enough to be in the hospital. If you're sick enough to be in the hospital, you're there a couple days, and then home to lay around on the couch for a few days, and then you're healthy. That's how modern medicine works.

Kids like mine...well, let's talk about Leaf, because Acorn is getting closer to fitting that version of normal than he's ever been...close enough to fool people most days.
Leaf is in the hospital right now. She's been there going on 6 weeks, which is way longer than most people can wrap their heads around, much less the 5 1/2 months she was in the NICU, or the 9 1/2 months than Acorn was.

A freakin cold landed her in the hospital for 6 weeks and counting. Who goes to the hospital for a cold?

There's no going home and laying on the couch a few days in order to be normal for her after this either - we're coming home with 100 lbs of medical gear (and a car battery!) that will go wherever she goes.

No matter how happy, smiling, and normal she looks (other than the tube in her neck for breathing and the tube in her belly for eating), she's not healthy per se. She's at risk. She's likely to end up in the hospital for most illnesses. The ones she doesn't won't be a couple of days of chicken soup, they'll be the kinds of things most people go to the hospital for - oxygen (more oxygen than normal), nebulizers running round the clock, multiple meds....the only thing we can't do at home is an IV.

Even EMTs will stop and stare if we ever call 911. The best they can do is scoop us up and run to the hospital - their oxygen tank is bigger, which is about the only reason we'd call anyway. When Acorn had RSV, we called 911. The paramedic in the back with us told the hospital dispatcher that they were doing nothing for him - we'd already done more than they could think to do.

And none of that fits into one of those 3 little boxes up there.

So...schools, daycares, friends and family....all these people have a hard time knowing how to work with our kids, because they just don't get it - they can't find a way to categorize our kids if they don't fit into one of their three boxes.  So they pretend our kids fit (or shoehorn them in, like the old version of Cinderella where the sisters cut off their feet to fit in the slippers).

And that's where it fails. Our kids aren't going to fit into those boxes, and a one-size-fits-all solution isn't going to work for us.

Monday, December 19, 2011

Follow-up: Antsy Pants Review

A little over a year ago I wrote a bunch of reviews of training pants. One of them was for Antsy Pants. In the end, given that the plan was for Acorn to go to daycare and we weren't really sure how long it would take him to be diaper free, we went ahead and bought a dozen Antsy Pants.

We bought them new - at the time, buying a dozen new trainers was the same cost as buying used ones. We also bought the 4T size - Acorn measured just within the sizing for them, and we figured that way he could wear them as long as needed.

We've been using them for the last year, and I've got a few things I want to follow up on. We've used these in rotation when we're out of the house, and used them at daycare along with some pockets for the few months he was there. The last few months we've used them at night too - without nurses to change him in the middle of the night, we've been trying everything we can to keep from having to get up with him.

Sadly, he's actually refusing the potty completely right now, to the point of screaming if we try to set him on it....but he'll happily pee in a cup if it means not having to get out of the bath, so it's clearly an issue of he can do it, but he won't. Here's hoping the potty is more appealing in the new year.

On to the review:

First, we did have one snap go bad within the first couple months. Of course, I was in the hospital on bedrest at the time, and my husband never sent it in for repair, so I will eventually (in my copious spare time) have to replace the snap.

We notice that the stuffers they provide (microfiber towels) fit better in these 4Ts than the 2T sized ones. We've used them at night with the stuffer and a cotton doubler for all-night wear....when Acorn actually sleeps all night. That said, be prepared to change first thing, because when completely soaked, the side panels start to wick, and then you'll have wet jammies.

Acorn is now wearing mostly 3T clothes - he's about 37 or 38 inches tall and around 35 pounds, so pretty skinny. The 2T one we originally bought still fits him, though it's starting to be pushing it at night or if he poops. The overall fit of the 4Ts varies widely among the 12 diapers we have (well, 11, plus the one with the bad snap) - some fit just right, some are still loose. Also, the side panels have worn somewhat - and unevenly at that - so some of these are really loose on him, and will fall off while walking if he doesn't have pants on that will stay up. Since we frequently still let him run in just a shirt and diaper at home, this can be a problem.

Speaking of fit: these don't mix well with very runny poop. They've been okay for peanut butter consistency stuff, but a bout of diarreha in the hospital proved too much, and we had to change out the whole bed. The previous diaper (with even more liquid poo - it was so bad I didn't even try to get the snappi out of the goo to clean it) had been a prefold and cover, and the cover contained *all* of it without leaking.

There seems to be a learning curve, too, when getting the inner layer flap situated when you're putting these on the child - if the inner layers are exposed, that wicks onto pants (or runs out onto the floor). It might be better if you're pulling them on a standing child rather than putting them on like a regular diaper, but Acorn still won't let us use them that way. We had one nurse who *hated* these trainers because they always leaked for her, but in the last few months, the only leaks I've had have been cases where we were wearing them for the day and Acorn flooded the diaper - we would have (and have) had a leak in any diaper

On the plus side, he hasn't ever taken one of these off, even though it should be easy for him. Pockets with velcro, on the other hand, have been a problem lately in that respect.

One other thing I'll mention: our physical therapist loved these trainers, because she could really see how Acorn was moving his legs and hips.

Friday, December 16, 2011

On Birth and Privilege

I like the idea of various groups that are pushing for more natural childbirth options - more midwives, fewer hospitals, fewer c-sections.
I see something interesting happening though - while they stress that women should prepare for their births, prepare to go into battle if they have to deliver at a hospital, birth plan in hand.....they don't stress having a backup plan. And they're mostly militant that any other option besides what they're presenting is a bad idea.
Must be nice to have the education to know what the options are. And to have health care resources (like being in a state where midwives aren't outlawed). And to be healthy enough, and have a baby healthy enough, to remain relatively low risk (based on Acorn's birth, Leaf and I automatically risked out of any midwife practice - hospital or homebirth - in the area, and obviously that was a valid reason to be required to be followed by an OB). And it must be nice to have support people who support those choices. In some places it's also a matter of money - around here, a homebirth is about $3000, though some have sliding scales. If you're low income and on medicaid, at least here, they won't touch the midwife's bill, but they'll pay most of a hospital birth, so the system is flawed to begin with.

Now, it's probably just my perspective, having twice been through a birth that wasn't what I had in mind, but if knowledge is power, then these groups are nearly as bad as OBs who start scheduling c-sections at 35 weeks. Nearly 1 in 8 babies is born early. Complications happen. And when you've planned the perfect birth and get something else through no fault of your own or the birthing staff you're working with, you're setting up a dramatic emotional upheaval - even moreso if you have no idea what the risks really are when interventions start.

I know women who have left midwives and doctors over something as simple as "we want you to have a backup plan, based on your previous deliveries." I know people who've had complications crop up in a third or fourth pregnancy after no issues in their previous ones who were completely lost when they ended up in the hospital, whose birth experience wasn't all that bad, but for whom the emotional strain of things gone wrong left them crushed, alone, and unable to bond with their child.

Does a c-section interfere with bonding? Well, you wouldn't know it to see Acorn, though I can see how it can make it harder. But what about telling women how to cope with that if it happens? Nipple confusion and breastfeeding issues? Most NICU babies here get both bottle and breast if mom wants, with apparently little or no confusion, and more effort to help women to breastfeed post c-section or while on meds like magnesium would go a long way to eliminating the problems caused by the less than optimal birth. And so on and so forth - I have yet to find *any* group that talks about these things, or provides information to moms who do have anything other than a natural birth.

Yes, we all need choices. Yes, fewer interventions are better. But it seems to me that preaching that no interventions is the only way to go hurts women and babies.

Sunday, December 11, 2011

Trying Something New

I'm struggling a bit with where I want things to go with life, work, and the like. I know I have to go back to work at the end of my leave (at least part time, because OMG the cost of insurance will eat us alive, and if you haven't noticed, we have some medical bills around here that insurance covers, so it's kind of important). That said, I'm mostly enjoying being home with Acorn (and with Leaf when she was home)...and there are doctors and therapists to see, and just a lot to be done that doesn't agree with a full time working schedule. Not to mention that I need to feed my soul - I need to write and create and Circle with others on occasion and do those sorts of things that fill my cup so that I can take care of everyone else.


I've been reading Goddess Leonie's blog for a while, and I love her energy and her approach to life. I love how she manifests things in her life. I've been drooling over her Creating My Goddess Year 2012 workbook too - and debating whether or not to get it because money is tight here, for a few more weeks at least, until insurance money starts rolling in (and hey, at least I got most of those ready to go out in Monday's mail, so I'm making progress, right?).  But I finally decided that it's less than $10, so I'm going for it.

I'm hoping to post some here about it, and likely will post more over on my "more me, less mom" blog, about how it goes as I work through it.

But first, I just have to say that it's as beautiful in person as the pictures on her website suggest:

Here's to 2012 being a little less complicated, eh?

Obligatory disclaimer: I bought myself the book - putting on my oxygen mask first, as most special needs moms are reminded from time to time. I want to join the Goddess Circle, but that will have to wait for insurance money to pay the bills...unless you all click on those affiliate links in this post and buy yourselves some of the lovely stuff Goddess Leonie does so that I get some spending money :)

Saturday, December 10, 2011

calendar, calendar, who's got the calendar?


No trach yet. Maybe Monday, if the surgeon can work us in, or else Tuesday, probably late, once the ENT comes back from his weekend trip. Or something....there have been so many scheduling issues with this ENT, I'd rather we just avoid him.

There are other things I want to say, but my brain is still uncaffeinated, and Acorn is not napping today, so there's a lot of chaos.

...things about supporting families in the hospital this time of year, and about how quickly it seems the year has gone, and how soon both Leaf & Acorn's birthdays will be. About the "war" on Christmas (and how hard it is being a non-Christian some days), and about writing and what I'm learning about myself during this leave of absence from work....

But I think it will all have to wait for another day.

Friday, December 9, 2011

An Overdue Update

It's been a crazy few weeks here.

Leaf is getting a trach - apparently tonight, based on the phone call I just got. We were planning for Thursday, then Saturday, and now today. Ahhhh!

Then we're probably transferring about an hour and a half away to a larger hospital to have her PDA surgically closed.

And then hopefully home to try to find our groove again, this time with more appointments to shove in the same amount of time.


Acorn has not slept a full night since his hospital stay. We're all exhausted.

He's also on a potty strike....unless it involves running around naked and peeing on the stairs, which makes them slippery. At least he wasn't hurt falling down them.

We're waiting for a spot to have him evaluated for a speaking device. I'm hoping it goes well; we're all terribly frustrated with his limited communication skills


All in all, this stay at home mom thing is mostly working. I'm less stressed, the house isn't a total disaster, and no one has died. Here's to the next 4 1/2 months.

Monday, December 5, 2011

Pagan kids out in the world

There are reports of a boy in Georgia being bullied by his teacher for being Pagan.  This sort of thing is something I worry about from time to time when it comes to my children. Not just at school, but at doctors' offices and therapy facilities, scouts and playgroups, in the hospitals we've stayed in and with the nurses Acorn had.

I like to think it won't happen here - a small-ish city in the suburbs, not in the Bible belt (though there are about 4 dozen churches in town), which boasts about its diversity. A place with a mosque, a Hindu temple, several synagogues, and Christian churches of all flavors (and in a number of languages). A place where within 5 miles, I can find several Asian grocers, a couple of Indian ones, a Pakistani grocer, a Mexican grocer, a Polish market, and a couple of Halal (Muslim) butcher shops which also sell other imported goods. A strip mall up the road boasts an Italian deli, a Jewish bakery, and Middle Eastern, Thai, and Greek restaurants.

And yet... our newly elected mayor is making the news for posting anti-gay statements on facebook.

Kinda makes you wonder whether we'll ever figure out how to all get along, doesn't it?

Saturday, December 3, 2011

21 Days of Yule

Today I'm a guest poster over on The Pagan Household talking about Yuletide Traditons - go read and enjoy, and watch for the other posts in the 21 Days of Yule.