Tuesday, December 29, 2009

A new project

I have a new little writing project, the Pagan Mother's Prayer Book. It's an online prayer book geared towards Pagan moms (as if you couldn't figure that out by the title), with audience participation encouraged.

Feel free to stop by over there and check it out.

We're travelling to my brother's wedding this weekend; I'll either post a lot more about the crazy family, or a lot less.

Thursday, December 17, 2009

when anxiety is too much

I haven't really said much on this topic yet, but I have lived with depression most of my life, and for me, that comes with the added complication of an anxiety disorder. While I've been on meds in the past, right now, I'm not, and I am working hard to keep it that way, because I'm just not me when I'm on them.

The week after Thanksgiving, I went to Mexico on business.

I didn't want to go - I have a strong dislike for being in places where I don't speak the language, few people speak any language I know, and I am obviously not safe going about my business.

Having a propensity to extreme anxiety, along with a hefty dose of social anxiety, makes travel just that much worse. My therapist and I are working on better ways to manange the anxiety. I'm much better now than a year ago at catching myself before it spirals completely out of control, but if I don't manage to head it off, there's not much to do but ride it out.
And right now, Mexico is a prime example of failing that safety requirement, and a place where, if there wasn't anxiety about going, you probably ought to think about therapy. I was told not to leave my hotel, and the engineering manager drove me back and forth because it wasn't safe to take a taxi, and wasn't really safe for me to be driving either. We drove through military checkpoints with lots of guys in camo, carrying large weapons.

To add to that, 2 trach kids (one on the message board I read, and one here local who shared nurses with us) passed away the week of Thanksgiving.

Although Acorn isn't as dependent on his trach and vent and such as he has been - we haven't had an episode of turning blue since shortly after he had RSV in May, and we have been steadily weaning him off the vent since September - it's hard not to think that this sort of thing could happen to him.  We've seen him stop breathing - we've used the blue bag like paramedics use on TV to breathe for him - for a while there, it was an almost daily occurrence. 

All in all, a perfect storm, anxiety wise. It was all I could do that morning to kiss him goodbye and walk out of the house, because a part of me truely believed that my plane would crash or that he'd die and I wouldn't know until I got home.

Though I think travel would still be an issue even without Acorn's medical issues, the whole medically fragile child bit certainly ratchets the anxiety up by an order of magnitude.

Once in a while, I just wish things were "normal" around here, but I'm not even sure I know what normal is anymore.

Sunday, December 13, 2009

different families, different philosophies

One of my much younger cousins has a baby only a few months younger than Acorn. She married the father of the baby, who is my age...which frankly makes the whole relationship feel a little skeevy, as far as I'm concerned. At any rate, this cousin of mine is an only child, and her parents are apparently deeply involved in parening the little girl.

We definitely don't see eye to eye on parenting methods, based on what I've seen of their interactions with my cousin when we were younger.

We're heading to my brother's wedding in January. We're taking Acorn - we've spent too many nights leaving him in the hospital to be ready to leave him somewhere now, even if it's with nurses all weekend, so we've been putting together all the crazy details needed to take him along. The happy couple did not say no children, and they are aware that we cannot leave Acorn with anyone who isn't trained, so there's no issue, right?

Except....last night I got a call from my uncle.

He wanted to know what we were doing with Acorn during the reception.

Before I go any further, in that context I really hate the phrase "doing with" - it makes it sound like your child is a toy to be put on the shelf when it's inconvenient to take them wherever you're going.

I called back a little later to find out what they were getting at. It seems that they were getting at was that they (my aunt and uncle, not the baby's parents) were planning to split shifts caring for her - one would miss the wedding, and the other would miss the reception. And they were sort of hoping that we'd be interested in taking one of those shifts with their little girl, if we were going to be skipping something with Acorn anyway. And that if we thought he'd stay with them, we were welcome to leave him - not that they know anything about his medical care, really, but you know, it's polite to offer to trade off if we were going to watch their granddaughter.

But....beside the fact that they're not at all knowledgeable enough to sit with Acorn for an evening, they're not the kind of people I'd leave him with, even if there weren't medical concerns.

I generally figure most children who are taken everywhere learn to behave appropriately - if you don't expose them to these things, how will they learn? We very rarely use the word "no" - it''s too vague, and too easy to tune out - no was their favorite word.

And, in Pagan terms....they don't shield. Ever. Acorn really isn't old enough to do that on his own, so this should be interesting.

Monday, December 7, 2009

A Pagan source of help for NICU families

As I've mentioned, Acorn spent 291 days in the NICU. While we were there, I read a lot of online things about ways to help friends/family in the NICU, usually with a list of helpful little things to get them through their stay

Side note: realistically, we got none of the typical list of things to help NICU parents - gift cards, disposable cameras, lotions, etc that are suggested - luckily for us, we live 5 miles from the hospital, but not going there every day sure did make a dent in our gas expenditures, and being able to pack in meals on days we stayed all day helped, but we were usually grabbing dinner from a restaurant on our way there.

We were the only Pagan family that we knew of in all the time we were in the NICU. Some of our NICU neighbors were very vociferous about their faith, including the parents who tried to convert nurses, and who wouldn't get out of the way for nurses to care for their little boy because they were too busy praying over him and laying on hands (I've recently learned that he came home with a trach - his early days were so very much like Acorn was at that size, and in the end, he's still much like Acorn, equipment and all, even down to sharing a nurse).

In the beginning, I was wary of taking things in that might raise eyebrows - not that I'm not fairly out about my beliefs, but that we were so dependent on these people for Acorn's care, I didn't want to inadvertently cause anyone's prejudices to impact him. After seeing the other families with their crosses on the wall and notes that Jesus loved their child...I slowly relaxed a little, and even got so far as discussing battery powered LED candles and stuffed animals to represent the quarters on the little shelf under Acorn's status board.

We know there are no Pagan chaplains at the hospital - several years ago, I was their only contact on file, and I'm sure they've long since thrown out my info. The couple of times the chaplains were there when I was there, they were very nice, but just not really very helpful - though the one that showed up in the trauma unit the morning BigOak got hit by the car knew Acorn immediately, and mentioned how cute he was, and how they all hoped he could go home soon.

There are a couple of organizations out there that make up care packages for NICU families - one that's pretty secular in their outlook, and several run by very devout Christians. We knew of none of these when we were in the NICU, and some of them we probably wouldn't have contacted. We truely felt that, even as long as we were there, it could have been far far worse for us - it could have been an hour drive. Acorn could have had some permanent disability or brain damage. We saw other children who didn't make it home at all....and in the grand scheme of things, a ventilator wasn't such a bad deal, you know?

We've been giving gift bags to our home NICU for the tiniest babies, like Acorn. We include a onesie or other baby clothing (sized for preemies 2 lbs and under), a hat, and usually a stuffed animal (Acorn's grandma has been making these for us). We've talked about doing blankies too, but just haven't had the time to find a reasonable source.

This weekend, however, I found a new Pagan Parenting website, paganparenting.org.  One of their first outreach projects is Operation Brighid's Arms, which provides care packages to Pagan families with preemies and other ill infants in the NICU. This is fabulous, and I wish they'd been doing this sort of thing when we were in the NICU. We'll be putting together a box of donations for them, and I hope some of you will too.