Still here

We're still here.

It's been a long summer, and we still have several weeks before school starts, but it seems like it's nothing but drama.

Leaf's g-tube surgery went well....but then healing was hard to come by. She rejected all the sutures, and the surgical site broke open from the new wound.  Nearly two months of wound care were required to get it healed - and I suppose it could look worse, but it could look better, too.

Preschool is going well. They were nervous, but she's mostly been good for them. She has a 1:1 aide working on going potty and as a general extra set of eyes, but she's not taking off running all the time because they're holding her interest. Other kids want to be her friends.

Acorn, too, is holding his own this summer. Although there have been behavior challenges, by and large they've been containable.

We've struggled with what to do with the kids on weekends. I keep thinking that I should do something Pagan-like with them, but the idea of actually planning anything gets pretty overwhelming, and then I think, well if I'm planning it for them, why not plan something for more kids, and then it spirals out of control.

As for me?  I published a book (finally!).  That's been quite a whirl-wind of emotion and chaos. But it also feels good to be DONE with it. What's next? Dunno, exactly, though I've been taking submissions for a children's prayer book anthology, and my goal this year has been to realize that I'm working on the universe's timeline, not my own....and that things happen when they happen.

We ran a donation drive for school supplies for foster kids on my reservation. It was a huge success, and we're hoping to do even more next year. I want to do more community stuff.

I need more sleep. I am tired all the time, and I hurt all the time - and that's not new, but it's getting worse, so it's probably time to do something about it. I finished off my Reiki Master/Teacher certification, wrote some classes on other topics....and have done nothing with them.

I really think I want to do something other than being an engineer, but being an engineer pays too well to walk away from. That's going to take some thinking.

We're meeting with Acorn's staff and his new teacher this week, to get them all trained on his communication device. We're hoping for a really good year with staff who are ready to jump in with both feet and make things happen. Maybe I can ride that energy along with them?

Parents and VIllages and Pagans

Lots of thoughts this week about how Pagan groups accept (or don't) the children of their members, and how that plays out at festivals. We are not at a point in our house where attending events regularly is doable in any sense of the word. But even if it were, I suspect we'd avoid most groups and events for the foreseeable future because of the way that most groups handle children.

There are basically 3 ways Pagan groups and events handle children. (1) No children, (2) Children are allowed if they can follow an adult standard of behavior that parents are expected to police, (3) Your kids, your problem - you want to let them run loose, great, if not, you figure out how to keep them under control.  There are a very few places that offer some sort of childcare, and when they do, it's usually organized by a parent.

Festival wise, I have a hard time justifying spending several hundred dollars to attend a weekend festival where I'll be lucky to participate in more than 2-3 scheduled events. If my husband and I each take a shift with both children so the other one can have a child free shift, and then we each take a shift with each of the children to do something fun with them independently, that's 4 shifts, and by the time you add in meals and a super early bedtime for Acorn, and that's probably most of the day.

Additionally, it's not like my children are old enough for me to leave them in a tent asleep while my husband and I do something fun after dark, so evening things are basically out, unless we each take a night solo (and really....what's the fun in that?).

This even boils over into teaching - because if I use one of my slots of time with no children to teach, then I really have very limited time to enjoy the rest of the event.

Even with childcare...we're probably still in that sort of spot, though Acorn could probably manage childcare if they were prepared for him (though given the difficulties finding him a babysitter, I'm guessing that most places still wouldn't keep him). Some places assume a more laissez faire, free range sort of child policy, and my kids are just not safe that way at this point - I desperately wish that they were, but to practice free range parenting your child has to be able (and willing) to consider the best course of action, and Acorn is not there yet - and Leaf is too young to expect that.

For local ritual groups, the same situation would apply either I have to find someone to babysit, or I have to find a way to convince my children to be still and quiet at all times, and to only act appropriately....and let's just say we're not there yet.

I wish more Pagan groups would get on with realizing that parents can still be active members with the right support, and that children aren't an annoyance to put in the closet.

I strongly suggest that you read Don't Leave Your Friends Behind, which is a book about parenting and social justice movements if you're interested in other ideas for how we could do better for families. (that's an affiliate link, by the way).

Busy, busy, busy

Oh yay, spring birthday season (we have 1 child in late May, one in mid-June, and my mother-in-law in June too) is over. Father's day is done too. But that's not all that's kept us busy.

There's been urgent letters to the school asking why Acorn hasn't had an AAC evaluation yet, and how that impacts his IEP....and arrangements to meet with a lawyer, who it looks like will be following along back stage, and putting us in touch with a good advocate.  Expensive, but....gosh I feel better having explained the whole situation with the school's anti-ASL stance and their lack of progress on goals that Acorn has already met at home, and having him backed up my feelings about the situation. I walked out of our meeting with suggestions in hand....so that was well worth the hour drive each way and the not insignificant check I wrote for the privilege.

There's been a push for us to provide Acorn with a stand-in AAC (augmentative and alternative communication) device until the school or private therapy (or both) got around to doing something along those lines, so we ended up buying him a Nook and installing Tap to Talk. Now to get him to use it....

Acorn has been discharged from PT and OT, with loads of instructions on things he needs to practice at home. He's also had his last day of school for the year, and been set up to go to Extended School Year (ESY) - the special ed version of summer school - though it seems quite useless, being 90 minutes twice a week.

Leaf is making strides too - not quite sitting, but close, and mimicking everything and anything. And eating baby food- who'd'a thunk it?

There's also been a lot of running around, trying to figure out what projects need to be done during my 4th of July week of forced vacation. My husband may be taking that week off too, so it's looking like power washing & staining the deck, and replacing the water heater, dishwasher, and freezer are all on the list. We're still running on the used water heater a friend installed when ours went out about 2 years ago. The dishwasher leaves dirty dishes frequently. And we will likely be giving our current freezer to K, and replacing it with a bigger one so that we can work on eating out less.

And I've been writing stuff for MoonDaySchool.com, which you should check out if you haven't already.

Plus, you know, normal things like sleeping and eating and changing diapers and going to work and all....because we don't have enough going on as it is.

What constitutes child friendly?

Recently, Acorn and I spent a little bit of time at our local Pagan Pride Day.

Now, I'll admit to being biased - the event has had several different organizers over the years, and none have seemed all that organized, but this year was particularly chaotic. There was still no published schedule the day of the event; presenters were invited to email or call to find out their time slots, and as a former (and probably future) presenter, that would drive me batty. There's no published vendor list (and I'm betting, based on what I saw, that few, if any, vendors made their table fees), so those folks aren't getting any continuing advertising for their efforts. The combination makes me a bit wary of future involvement - running an event like this isn't an easy task, but these seem to be basic things that ought to be a priority for a festival.

At any rate, I guess you could say this event was child friendly, because it was in a public park, and the playscape was the focal point for the kids. We didn't stay all day, but other than this, I saw no evidence of anything that would interest children, other than the vendor with tumbled stones (who, of course, caught Acorn's attention - she had carnelian, and Acorn is obsessed with all things orange).

I've been approached about running kids activities at other local events. Almost no one wants to do them, and my previous involvement in SpiralScouts marks me around here as someone who does "kid things." And right now, I'm not really up to doing anything....but quite frankly, I do more than just kid things, and I don't want to be stuck dealing with other people's kids all. freaking. day. - especially at a festival, where I'd like to have an opportunity to enrich myself as well as others.

I feel like I've complained about this before, and I probably have. I just don't know where I put the various rants :)

One festival I attend regularly has a kids & families programming track, but the quality and age options vary greatly, and parents frequently seem to feel it's meant as a babysitting service. Many places don't even have that though - kids are discouraged from attending, or there's nothing for them to do at all, so parents are stuck figuring it out themselves.

Would it be so hard to have a kids' area with activities? Little mini workshops?  Are there any festivals out there that do an amazing job of putting together stuff for kids to do? What would an awesome kids' program look like at a festival?

Blowing Bubbles in the Bathtub

Tonight during bath time, we discovered that the bath paints I bought on clearance didn't work, and Acorn wasn't into painting anyway.

So instead, we blew bubbles and poured water from one container to the other.

I was struck by this - funny, because it's not the first we've blown bubbles in the bath, or even in other parts of the house. But when I was a kid, both would have resulted in punishment. Bubbles were outside toys, so we didn't make a mess in the house.

Rules are funny things. Growing up in a house with a father who has sensory processing issues at best, and some sort of spectrum disorder at worst, we had a lot of rules that, looking back, had little rhyme or reason to them.

The thing is, those rules are so ingrained - so much a part of my psyche - that sometimes it's hard to break free of them even now.

But I do try - when my first reaction to something is "no" I ask myself why - what would happen if I said "yes," what would happen if I didn't yell.

And so, we blow bubbles in the bathtub some days. Once in a while we even blow them in the living room. I hope Acorn learns to blow bubbles sometime soon...and maybe then we can finally take them outside to play with us.

I feel like we're the zoo attraction

I used up all of my dealing with people points today before my in-laws ever left the NICU, and then I had to deal with them through dinner....

Acorn is 37 months old. That means he left the NICU 28 months ago.

In that time, his grandparents have been out to see us for 3 birthday parties, and to help build his play structure. Other than that, we only see them on holidays. They visited about once a month when he was in the NICU - go to lunch with us, spend an hour or so staring at him, and then head home.

Yesterday they called, wanting to come visit today....because they want to visit Leaf. Their interactions with Acorn are spotty at best - they've forgotten what it's like to have a toddler or preschooler, I guess, because they want him to visit on their terms. Sit in their laps, read a story, and so on - things he doesn't do well, because he wants to be up and moving, but worse, things he won't do with them because he sees them so rarely.

It's a shame that Leaf appears to be the only reason they're visiting - like going to the zoo for the afternoon. Take the tour, stare at the child in her crib (behind bars even!), move on to the next attraction (Acorn), be amazed that he's got opinions and knows what he want (remember, folks, just because he can't talk doesn't mean there's anything wrong with his brain!), then dinner and home.

Wasn't that a nice day?

Sigh.

And guess what? In two weeks we get to do most of it again, when out of town family come to visit (spouse's uncle, with his wife-to-be - a former friend of his now ex-wife - and her two children...there's drama there that I don't want to be near with a 10 foot pole). We've already said we won't drive the hour out to the grandparents' house with Leaf in the hospital - if they want us at dinner they can pick someplace closer to us. What we haven't told them we also won't be letting them all into the NICU. I'm not letting someone else's kids back there - I don't know where they've been.

Welcome to our Crazy Life

So far this week:

My car has been in the shop. It's worth ~$2000, it needs 3 different repairs, each quoted by the dealer as being $750. We're going to make one of them (which, according to a late breaking text, isn't actually the repair we thought it would be - dealer's diagnosis and local shop's diagnosis disagree, so this first round is considerably cheaper than anticipated), and get some other things in order to be able to pay all or mostly cash for a replacement vehicle later this year.

The washer started making noise a couple weeks ago. ~$200 later we will have a new pump tomorrow. I do not want to replace this until Leaf is out of diapers - high efficiency washers and cloth diapers seem to have issues, and I like my old washer.

The fridge started making noise last week. The compressor is bad, which is a $750 repair. I think the fridge only cost $780 when we bought it 10 years and 6 weeks ago, as our housewarming present to ourselves. The repair guy said he wouldn't fix it - we're better off buying new.

My great aunt (or 3rd cousin, or something - in this case, tribal kinship rules make more sense than actual geneology) passed away last night. She was my grandmother's cousin of some sort, but she was raised by my great-grandparents because her family was sickened by a cholera outbreak, and they wanted to protect her, so they sent her away. Last year we learned that Aunt E had a sister still alive, back on her home reservation.

Aunt E was the first person I ever met (and I was 10 when I "met" her the first time that I actually remember meeting her) for whom faith was something one lived their life by, rather than just the name of the church one attended. For her, it wasn't about needing to *believe* in something - it was complete acceptance, a quiet knowing - there was a glowing solidness to her faith. I used to pray that I'd be given faith like hers, and in some ways, I have that solidness now....just not in the same God, and not always to the same extent that I always saw in her.

Aunt E was diagnosed with stage IV metastatic cancer of the lymph nodes back in 1993 or 1994, before I even met my husband, and she decided a year or so later that she was going to enjoy what time she had left, rather than go to doctors so she quit all conventional treatments (though she did see a traditional healer)....and cancer still wasn't what killed her this week, more than 1 5 years later.

And that's just the unusal stuff, not anything related to the NICU or nurses or work or the terrible threes (really, two was a good year for us. Three is turning into a disaster of frustration and tantrums, and I really would like my sweet boy back, thanks).

No wonder I feel overwhelmed - that'd be a rough week without our normal chaos.

Oh the Irony

Just a quick post - no time for writing this weekend; my mother is in town, the inlaws are coming tomorrow for a trip to the NICU and to celebrate Acorn's birthday, which is Monday. There's cupcakes to be made for dinner and for the NICU, and just a ton of other things to be dealt with.

Irony though - and not the Alanis Morrisette version:

My mother got here Wednesday night. We went into the NICU Thursday morning, and on the way out, she said, "Well, now I feel better." When questioned about what she meant, she said, "Well, I couldn't figure out why I was so nervous - this baby is bigger and stronger and older than Acorn. But really, I just needed to see her to be sure."

This from the woman who told me for 3 days after Acorn's birth, that a picture of him was just fine, and should be sufficient in place of actually going to the NICU and seeing him, since I was so sick.


Gee, thanks for your support mom. And she's a licensed therapist....

Random Thursday Thoughts

I am officially more pregnant than I've ever been before (though, if you're going by baby size, that's been true for several weeks). It's still really odd.

The longer I'm here, the more twitchy I get about things - I'm twitchy about ultrasound gel. I'm narrowing down food choices. Showers are a requirement, not just a nice treat. I'm irritated by people who are acting like idiots. And on and on. That combination suggests depression, or at least a problem coping....but I'm still writing, so it must not be that bad yet, because when I'm actually depressed, I stop writing. So that leaves me confused - is this just decompressing? Or what? My former therapist has agreed to take me back as a client and to make hospital calls, but her father-in-law is dying, 4 hours north of here, so arranging an appointment has been challenging.

Acorn has really gotten creative with his climbing - the sink, the kitchen counter, the dining room table (with an attempt at hanging from the chandellier), and anything else available. This week he tried to use the high chair and the potty chair and several toys to help him get onto a bookshelf; when those were taken away, he started trying to use a board book....set up on end, covers bent back, pages splayed around in a star shape - short of making a stack of books, it's actually the strongest way to stand a book, in terms of load capacity, and it probably would have worked. And we had early intervention folks who thought not speaking meant he wasn't smart. ha!

Tomorrow is my 11th wedding anniversary. My husband is going to bring me  a nice dinner; certainly not the way or place I'd prefer to celebrate our anniversary, but compared to some years, this still counts as good - it involves us having a calm evening together, it doesn't involve a funeral, so that's an improvement.

The tweak to my BP meds is both good and bad - I'm watching the BP numbers creep up day after day, which is bad, but it helps a little bit with the sleepiness and brain fog. I guess we'll see.

there's nothing here to be sad about

Note that while the first trimester is supposed to be the point when you're exhausted, now that we're on to the 2nd, I seem to have finally caught the "OMG pregnant must sleep" bug, so I apologize if this is incoherent...I'm a nap short today with a sick kiddo.

*****

My father is coming to visit this week. He called to discuss arrangements, and to ask if Acorn would be afraid of him, like last time he was here.

Keeping in mind that "last time" was Acorn's birthday, during the summer, and that it was the 4th time Acorn had ever been around him (at birth, the summer he turned 1, my brother's wedding at 18 months, and then last summer)....and that we were at the height of Acorn's anxiety about everything, and that my dad is not the most cuddly or socially skilled person in the world, you can see why he'd be wary of this man showing up and wanting to play with him.

I told dad that it was hard to say - that the anxiety is a lot better, and that I had figured on finding some things they could do that were Acorn's favorite things, which would pre-dispose him to being more open.

My father was upset by this. More to the point, he was upset by "all this crap that Acorn has had to go through" because clearly, that's what makes him afraid of strange people.

Right. Because more typical kids without our medical history are never shy, wary of strangers, or afraid of doctors. Because normal toddlers remember people they haven't seen in 6 months (frankly, it wouldn't surprise me if Acorn does remember him, but has already made a judgement about him and filed it away).

I just wish that people would stop looking at what has been, and look at where we are. Clearly, Acorn does not feel that his life is a tragedy. He's happy, as healthy as any other toddler we know...granted, he has a couple extra pieces of hardware, but it's not like he lets them slow him down. Life is what it is, and focussing on the past doesn't gain us anything at this point - we've done what needed to be done, what seemed to be best at the time, and we've moved on. I just wish everyone else would too.

Our big news

This week's big news: Acorn said his first word.

Given all the drama with the speech therapist from EI, you'd think that we were talking about two different children.

Granted, he's still not consistent. He's gotten close on several words - we know what he means, contextually, but he's dropping a lot of consonants. But for a child who couldn't make a sound most of his first 18 months, it's just about right on target.

*****

This week I've felt like quite the grown-up, having gone to a lawyer to talk about a will and a special needs trust. There are people that we cannot fathom Acorn staying with if something happened to us - family members who wouldn't interact with him when in the NICU, family who aren't stable enough to take care of themselves - and they're the same family members who would be most vociferous about our decision to ask someone other than a blood relative to be his guardian. A good lawyer can do wonders, and ours appears to be an expert in estate planning and special needs estate planning. I hate that things have to be this way.

Baby Fever

Have I mentioned that I want another baby?

I know, it sounds crazy. We have all this stuff going on, and there is the liklihood that another pregnancy would be equally high risk...adding another child to this would be crazy, right?

That's why it's called Baby Fever.

*****

I'm back to trolling adoption sites, falling in love with children I haven't met. I'm charting temperatures (and approaching 3 months without ovulating). Fertility drugs and their accompanying mood swings were not fun...but I'll do it again, if that's what it takes (which it will....up to the point we are willing to go, which is to say, we're not doing IUI or IVF, but there are personal reasons for that that I don't want to get into here).

It's not as painful as before Acorn, but it's approaching the same intensity. It's not as sharp; it doesn't bring tears to my eyes to see pregnant women and newborns...but instead, a deep sense of longing.

*****

The other morning, I dreamed about being pregnant. About finding out I was pregnant. It was one of those amazingly detailed dreams that seem so real, it's hard to tell what reality is when you wake up. It was a dream involving finding out away from home, and having to tell other friends suffering infertility about it - something I didn't really have to do last time, because back then, all my friends who wanted babies already had them.

I used to trust dreams like this, but...I'd had so many dreams that my first child would be a girl, and instead I have a boy. So many dreams about 5 kids (always five) and yet I only have one....and his existance was "just barely." So many dreams about our business being wildly successful, and we've shut it down. So many dreams.....all wrong.

*****

And yet, I know that right now is not the right time. There are family plans in the works for early summer, and getting pregnant now would almost certainly mean missing out. And since it's not like it'll just happen, these things have to be planned, and if you're going to plan out the next year and a half of your life, you might as well try to make it convenient.

And who ever thought kids and convenience belonged in the same thought?

This life of ours is complicated

I understand that some people don't get our life with a special needs child - that the day in and day out realities are just too far from their experience for them to grok the situation.

You'd think my mother wouldn't be one of those people.

I mean, she's been a therapist. She's been here more than once to visit, and for more than a day or two at a time. She's been a foster care worker, and had caseloads that involved organizing services for special needs kids.

But from the very beginning, she's been incapable of really understanding what we live with. In the NICU it was "oh he's fine - what are you upset about?" when Acorn had a bad blood gas, went back on CPAP full time for the second time (downgraded from a nasal cannula of oxygen), and started lasix to help prevent heart failure.

Last year it was, "oh, don't worry about germs, all kids get sick" and "oh, he'll figure out eating when he's ready - not all kids eat solid foods right away" Yes mom, but not all kids end up in the ICU when they get a cold, not all kids are home on ventilators and in precarious lung status before they get sick, and not all kids have had tubes in their mouths for months at a time, missing the developmental window for breastfeeding to be a reflex, and then have a trach to deal with.

This trip...this trip's failure to understand involved time.

Between Acorn and I, we had 9 appointments during my shutdown week (ie, forced vacation) - while I totally respect the concept, I'm hurting for days to get doctors appointments in this year, and giving up 4 days of vacation because my employer demands it is painful. She followed us to Acorn's appointments, sat and graded assignments for the college class she teaches while I ran to my appointments.

She's on a quest for "spirituality" (and as a Pagan, I totally respect that, though as a priestess, I wonder about her choice of timing and her reasons for looking now). Now that some political things are out of the way, and my brothers and I (and Acorn) are enrolled members of the Native American tribe she and her family belong to, she wants us all to have a naming ceremony together. A cousin of ours will do it, and is known for his ability to ask Great Spirit for the name for the person he's naming. I think it would be very nice - a nice rite of passage, and a memorable thing for us all.

Now, these things take planning. Lots of planning, because a give-away is required, where you give gifts to everyone who attends, and have a feast. So, she gets it in her head that we should do it this fall, or maybe next spring. And a part of me thinks she wants it this way because (a) she knows her mother won't support her in providing anything for the ceremony, and (b) she's a college student, so spreading the responsibility for paying for the giveaway is a benefit to her.

I explain (for about the 10th time this week) that I do not have vacation days available to travel to South Dakota this year, and may not have them next year (given that even if Acorn is decannulated, we'll still have follow up appointments for some time). The only time I would have available in the next year is Winter Shutdown (i.e. Christmas Break) and Summer Shutdown (i.e. 4th of July break). And that I didn't think winter travel was a wise idea, given the weather in South Dakota. That it's a 2 day drive (minimum) for us, or 9 hours combined flight time (including layovers, and not including security, getting the rental car, etc), so it's not really a weekend trip for us either.

Oh. Well, that puts a damper on things - it really limits her options, and complicates things.

Yeah. Her life is soooo complicated.

On cows

My friend Kysilka, over at It's All Good if you Can Laugh, posted today about growing up in the middle of BFE, and calling the cops late one night (when she got home, because this was in the days before cell phones) because a cow tried to kill her, and she only escaped via her skillful driving.

I laughed, and then twittered:

hubby once hit cow w/ motorcycle; highschool "friend" hit cow with canoe.

She, of course, told me that I had to blog about that canoe bit.

So, imagine, if you will, a high school youth group on a summer retreat camping trip. I, growing up in the crazy house that I did, was not allowed to go on this trip, because even though it was a church trip, Bad Things(TM) might happen. (seriously). So this is second hand information, but second hand from everyone who went on the trip.

Our pastor's daughter (T) and one of my cousins (R) were along on this trip. Not the brightest girls, but bestest friends.

The highlight of the trip for most people was the float trip (which, for those of you not familiar, is a day of getting sunburnt, and possibly pelted by hail, while you try to keep from tipping your lunch out of the canoe into the river your canoe is travelling on). There's usually no rapids to speak of, and nothing tricky to scare people - it's just a day of floating down the river.

The guide at most of these tells you as they throw you out of the bus and into the river that there should be 2 people per canoe: the back person steers, and the front person paddles for speed. Unless you're lazy, in which case no one paddles, because the water is going the way you want to go anyway. Or unless your canoe is manned by two teenage boys who want to prove how manly they are, so they start paddling for all they're worth, ignoring the scenery.

Anyway. In Missouri, there are farms alongside rivers, because crops grow really well on flood plains, and because that means they don't have to worry about watering the livestock - they just mosey down to the river when they're thirsty, and actually go out into it when they're too hot. This is an important point.

As luck would have it, no one really wanted to be in the canoe with either T or R, so they ended up together, T in front, and R in back.

Somewhere along the river, they came to a farm. It was August, and the cows, being somewhat smarter than the people broiling in their metal canoes, were actually in the water.

As the girls are floating along, T says, "Hey, R, there are cows in the water! There's one standing there, heading right for us! Steer!"  (remember...the boat is moving on the water at a nice walking pace. The cow is *standing* in place, and the water is only about 3 feet deep)

R says, "Steer? I thought you were supposed to steer!"

T says, "No, I'm supposed to paddle, you're supposed to steer!"

All the while, that stationary cow is looking at them, chewing her cud, and standing there, coming right at them.

Finally, when they're within about 5 feet of the cow, T stops arguing with R, holds her paddle over her head with both hands, and starts screaming, "OhMyGodOhMyGodWe'reGonnaHitACowOhMyGod." R turns around, realizes that they're going to hit the cow, and starts screaming, "Paddle! Paddle!"

Everyone else stops what they're doing to watch the impending disaster, wishing they had video cameras, because this would totally have won them $10,000 on America's Funniest Home Videos.

The screaming continues, as the canoe lazily drifts down the river, and eventually does, in fact, run into the cow. The cow gives them a dirty look, moos, and walks away.

The moral of this story, folks, is that cows expect us to be smarter, what with our opposable thumbs and all, and they really don't think we should be invading their rivers.

comparisons and perspectives

We don't get out much, given that we're supposed to practice "social distancing" throughout the colder months to help avoid Acorn catching germs. He has one-on-one care here at home, so there's no need for daycare; there aren't many playgroups for toddlers of working parents, and the few for-pay classes for kids his age that are at times we can get there are just not oxygen tubing friendly.

Because of this, we've kind of lost touch with any understanding of what constitutes normal development - lost in the world of therapists and IEPs and goals. We've spent so much time worrying about how to get Acorn "caught up" (at 9 months, he could barely roll over, much less sit independently), that we forgot to keep track of what "caught up" means.

We spent several hours yesterday evening at a BBQ/potluck for a local attachment parenting group. They've always been super welcoming of us, 
even though we aren't quite as crunchy as many of them, and even though I'm not a stay at home mom. It was interesting to see Acorn around other kids about his own age - a real perspective changer.

Sure, they all talk...a lot...though not always intelligibly. That's something that he's still far behind on.  They eat a lot - some of them eat whole apples even. That's definitely not something Acorn can do. He walks only a little more tentatively than they do, but most of them have been walking almost a year, and Acorn has not yet been walking for 4 months. Several moms who remembered him from last summer (when we were just happy that he was sitting independently) were shocked and amazed - he looks so healthy, so normal... one mom pointed out that her son is a month older (actual age), and that she saw nothing in Acorn's actions that wasn't mirrored in her son.

Even our OT has said that if Acorn came into EI right now, he'd not qualify for occupational therapy (even though he avoids using one hand and has some sensory defensiveness) and probably wouldn't qualify for physical therapy either,  even though he can't jump and trips over sidewalk cracks.


So there we have it. Perspective. We still worry about the little things - after all, we've been well trained in picking them out. But we are a lot more comfortable with the idea that things are just fine as they are, and that all this therapy is working out.

Almost Wordless Wednesday

One year ago today, Acorn finally escaped the NICU and came home.

 Last pic in the NICU

Out the door

And finally at home

Easter traditions, when you're not Christian

Our Ostara celebration involved going to the park today. It was chilly - more chilly than I would have preferred for a walk, but we all needed out of the house, and Acorn loved the swings.

Our walk was marred, however, by a call from Acorn's grandparents (Big Oak's parents, not mine).

We used to have a good relationship, really. I used to like hanging out with them. Over the years, however, their outspokenness about the fact that we "owed" them grandchildren (in the midst of fertility treatments, no less) has taken its toll. Add to that the fact that they were miffed that we wanted to spend Thanksgiving and Christmas with Acorn when he was in the NICU, and you've got the perfect storm of in-law insanity.

Big Oak had taken it upon himself (initiative? who is this, and where is my husband?) to call them a week or so back to discuss what the plans were. We know from experience that they will decide at the last minute what the plan is, and what exactly they want us to bring - the first year we were married, they told us on Monday of Thanksgiving week that they wanted pumpkin pie....and I was in another *state* until late Wednesday evening. Where do you find pumpkin pie at 9 pm the night before Thanksgiving - in fact, where do you find *pie crusts* then?

Grandpa had said that Great-Grandma wanted to go out for Easter dinner. It was agreed that they would talk it over, and get back to us with a plan.

Apparently today they decided to get back to us, since they were visiting Great-Grandma, and sitting around, it occurred to them that they ought to talk about it. We said, ok, what did you decide we're doing, and they basically said they thought they were waiting for us to decide.
?
So, after a bit of back and forth, it was agreed that they'd come to our house. Not that I want to have everything cleaned up for their arrival, but we've been to tetheir house the last several get-togethers, and it's an hour drive out there, plus getting all of Acorn's gear into our car, out of the car into great-grandma's house, down into her basement, and back again.

Then grandpa says, "not to put you on the spot, but what should we bring"

So wait. You've just decided you're crashing my house, for a holiday we don't even celebrate, and you think I'm going to pull a menu out of thin air?

At any rate. We're supposed to call back later this week with requests. I'd already said that I wanted to make Peep Salad. We've been discussing what to ask them to bring - bread? well, we make our own here, and it's far more tasty than the cheap brown-n-serve rolls they're likely to bring. Dessert? Dessert from them will either be something store-bought with a scary ingredients label, or something great-grandma makes with no fat and no sugar - and what kind of dessert is that?

Ah well. Maybe I'm spoiled, since in my family no one would have dared brought a store-bought side dish to a family celebration. On the other hand, I'm also glad we celebrate holidays that are important to us on our own, without their drama.

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.

Thanksgiving

Holidays with the in-laws have been stressful for a while, and Acorn just complicates that.

They never want to plan until the last minute, and then they want to tell us what to bring, rather than letting us make suggestions based on what's available. It's always expected that we will come to them. And no matter what they say they want us to bring, someone is unhappy. If one wants pumpkin pie (or pecan, or cherry, or apple, or peach or chocolate, or butterscotch), someone else doesn't eat it - and there's never any appreciation for homemade food.

I should point out that other than holidays, most of the time we get together with them, we eat out. Lately, we're not eating out much at all; eating in is better for us and less expensive, and the concept of cooking is a bit of a stretch for them most of the time.

I love to cook. I would happily cook the entire dinner for them, no strings attached, but that's not how they operate.

Last year took the cake, as far as insanity goes. They called the Monday before Turkey Day, and wanted us to bring rolls and dessert. 

Keep in mind, Acorn had been in the hospital for 5.5 months, and had just gotten his trach 2 weeks before. Big Oak still wasn't getting around on his broken leg all that well, and still wasn't allowed to drive. We were generally failing at keeping things together - we ate out because there were no groceries; there was only clean laundry because Big Oak's broken leg had prompted  me to give in and hire a housekeeper, but she'd only been working for us about 3 or 4 weeks. We were never home.

I suggested that we could bring stuffing instead - I knew we had everything on hand for that. But apparently that just wouldn't do, grandma wanted to make *her* stuffing....which it turns out is a box of turkey flavored store brand stuffing, mixed with a box of chicken flavored store brand stuffing.

And then....they wanted us to come out to their place, a little over an hour away, around noon, eat, hang out, and eat again.

Without Acorn.

Without even seeing him.

Because, you know, it's entirely normal to leave family members alone in hospitals on holidays, without even planning to visit them. Just because they're too small to remember doesn't really have a bearing on the situation.

*sigh*

At least this year, dessert isn't on the list of things we're supposed to bring. Last Easter, they were awed by my fresh, still warm from the machine, home made bread. Just that, salad, and the baby is all they want us to bring.

It usually means bringing my A-game as far as grounding and shielding are concerned too, but we won't mention that to them :)