Tuesday, December 21, 2010

At least some changes can be slow

Yesterday I toured a local daycare center.

It's something I never intended to do - before Acorn's birth, we'd talked about a nanny, or maybe having a family member watch him.

After his birth, when we thought he was coming home at 4 pounds with an oxygen cannula, we chose an insanely expensive private Montessori school that took infants through kindergarteners. They took cloth diapers, they didn't mind oxygen, they didn't mind the 3 month delay in skills. They santized obsessively, and had a culture where kids didn't come to school when they were sick. Our only complaint was the cost, but what could we do? It was certainly something we could afford to pay for, although it was going to require some budget adjustments.

And then came the trach. And nursing. And dozens of appointments.

And here we are - we can see an end to the trach, and with that comes and end to nursing.

Acorn is not the kind of kid you can leave with someone he doesn't know. He's had far too many bad experiences in his sort life to be comfortable with that. His primary day nurse has been with us since he came home, 19 months ago. To take away caregivers he's completely comfortable with, and thrust him into a completely unknown environment full of other children (which he has very little experience with) would be a disaster.

Actually, that lack of social experience is a big part of why we're doing this instead of a nanny. We have a Montessori elementary school in mind, which has a preschool program...but right now there's no way he'd be ready to do that next year without some experience between now and then.

So....yesterday I went and toured the best daycare we'd found in over two dozen calls. It's not Montessori based, but it's attachment-parenting friendly, cloth diaper friendly, low kid to teacher ratios, and close to home. It's a place where everyone works together, and teachers and children alike are expected to treat each other with respect no matter how different they are. It's a place that already signs with their toddlers, so signing isn't a problem; it's a place that routinely has children who come in speaking only a foreign language, no English - so the speech delay doesn't phase them. It's a place that has had challenging behaviors before (2 different kids who were eventually diagnosed as Autistic) so Acorn's quirks aren't going to seem like a big deal. It's a place that's very open to parents sticking around, and who wasn't phased by the statement that he comes with a nurse. They happily challenge kids academically, don't mind 3 year olds who aren't potty trained (though I hope we'll get there in the next 6 months), and treat each child as an individual.

It's a place that will work to figure out Acorn, complications and all, and give him some experience with what normal kids do. And they have no problems with him going 2 days a week from January until decannulation, and then switching to full time without a nurse, because by then he'll be comfortable there, know the routine and the kids and the teachers, and removing the nurse shouldn't be an issue.

Or at least, that's the plan...not that he's been all that reliable about doing anything according to plan, but it's the best we've got right now.

Sunday, December 19, 2010

changes

All changes, even the most longed for, have their melancholy; 
for what we leave behind us is a part of ourselves; 
we must die to one life before we can enter another.  
~Anatole France


It's looking like 2011 will be a year of change around here. There's a lot going on behind the scenes - big big changes are afoot. Big changes, and even some little ones, can be scary.


The most obvious change heading our way right now is that Acorn will be getting his trach out. He's capped all day except for his nap (and he's catching part of his nap with his cap on too). He has to go all day, including his nap, with a cap, before they'll schedule decanulation, but they won't schedule it until the spring anyway (to avoid pulling it during cold and flu season and then having him end up back in the PICU with a severe illness).  They told us to expect it to take a long while to work up to wearing it all day - a couple minutes at a time, even - but within a week he was wearing it all day without any issues.


When we started capping him, we also downsized his trach, and that has meant he's not sleeping on oxygen either (which shouldn't happen, logically, but it seems that kids with BPD/CLD are super picky about pressures, and the difference matters to Acorn). It's so amazingly quiet in here without the oxygen concentrator running - not that we hadn't realized that during the day, but during naps, and at night, it's almost eerie -there's not a sound through the baby monitor, and that's so amazingly different from a year ago, when we listened to him breathe with the help of the ventilator.


But decannulation also comes with some down sides. We lose nursing, and we need to find Acorn a daycare situation. We lose the ability to treat hard-core illnesses with the equipment and supplies we have here at home. We lose the security of knowing that if anything does happen, we already have a guaranteed airway - our recussitation bag doesn't have a mask, just a trach adapter. 


Not that we've bagged him in the last 18 months, but I've got a friend whose child recently had a febrile seizure and stopped breathing, and the panic in her voice even a week later was horrifying; here we have dealt with a child not breathing and turning blue enough times that it isn't such a shocking thing anymore, especially since we have all the equipment that an ambulance would have.


Anyway. There are other changes coming too, and I know I'll be talking about them in their own time, but if one big change is scary, think of how several all at once must feel. I keep reminding myself that it really is a light at the end of the tunnel, not just a freight train.

Friday, December 17, 2010

Trach Mom's 12 Days of Christmas

My friends, @kysilka and @jterzieff, decided we should have a blog theme day, with the theme being "My Version of the 12 Days of Christmas."  On one hand, I could point out that we celebrate Yule, which falls on the 21st this year, but I figured that wouldn't be in the spirit of the game.

You can go see all the entries in the comments over on Julliet's Blog

So....without further ado, I present to you the Trach Mom's 12 Days of Christmas:


On the 12th day of Christmas my trach kid gave to me:

12 saline bullets
11 suction catheters
10 rubber gloves
9 lost trach noses
8 tanks of oxygen

7 alarms alarming
6 therapy appointments
5 pulse ox probes
4 crazy doctors
3 night time nurses
2 trach ties
and a broken suction pump (yes really, one of ours is broken again)

Saturday, December 4, 2010

Saturday morning

Some days, morning comes far too early. Our Saturday nurse is out on medical leave, which means on Saturdays, one of us has to be up by 7 when the night nurse leaves for report...and then frequently, I head back to bed, and turn the baby monitor on.

This morning is no exception, except I couldn't sleep.

I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.

Acorn is not even 48 hours post surgery, which has brought its own issues.

At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.

But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.

Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.

No....none of that could possibly be making him restless. Not at all.

Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night.  We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.

ahem.

Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?

Thursday, December 2, 2010

deja vu

Today Acorn is having (will have had, by the time this posts) surgery that will hopefully finish contine repairing his hypospadius (though there's a risk that they won't finish in the time allotted, and a risk that it just won't heal quite right, and in either case another surgery will be required). didn't finish. sigh.)

It's a day of deja vu all over again.

Not just because we just did the first batch of this back in April.

No....this is deeper than that. This morning we drove the same drive to the hospital that we made at least once a day, and sometimes twice a day, when Acorn was in the NICU.

We parked in the same parking spots, made the same walk across the bridge (albeit with the stroller this time).

We came to the same surgical waiting room where we sat to get his trach. The staff here remembers Acorn - he's too cute not to remember, but kids with trachs aren't that common here either, which means they remember the trach, they remember we were here forever (though no other details) and they comment on how big he is, how much he's grown, how his smile still lights up the room.

Last time we were here (or was it the time before?) there was a couple at the other end of the waiting room with tiny twins, only a couple months old, both on oxygen, and a pulse ox. One was getting eye surgery, and while waiting, the other started screaming to be fed. Mom was trying hard to make formula while digging through all their equipment, and was terribly embarrassed about the noise. I wanted to tell her not to worry; babies cry, and she should be greatful that she could hear hers.

I will always remember the smell of hospitals. The smell of disposable diapers (one of the little reasons we stick with cloth) mixed with sweat and blood and fear.

And though it pains me to put my kid through this again, to put me through this, it needs to be done.

Saturday, November 27, 2010

Winter can bite me

Dear blog, it has been 11 days since my last post. Before that it was 7, and then 5 (though that was just a little blog hop post) and before that 7.

I could blame it on a lot of different things, but the real root cause is that it's winter, and this is Michgan, land of not much sun in the sunny part of the year, and no sun at all this time of year, when it's just becomming light when I leave for work, and nearly dark when I leave there for home.

The truth of the matter is, I'm struggling, mood wise, and it shows in my blogging, or lack thereof.

It's not like this is a new thing. It's been ongoing, to varying degrees, for years. We've replaced most of the lights in the house with full spectrum bulbs, I've increased my vitamins, I've learned to meditate. I've even taken antidepressants at various points. Some years have been bad. Some years, like the year Acorn was born, I was already so overwhelmed that the seasonal changes were completely unnoticed.

And maybe that's part of the problem too. I've been stressed lately...but not in the same sense that I was back then. This is more a death by a thousand cuts kind of stress, and I'm just not up to handling that sort of thing these days, because there are so many more important things to deal with. We're making plans for next year - plans for life without a trach, we hope. And that's a huge adjustment for all of us.

It's good, but stressful, and the fact that there are so many good things going on right now just makes the depressed mood stick out more.

Tuesday, November 16, 2010

Preemie Awareness Day

I'm writing this post the night before, due to work schedules being hectic.

Earlier this evening, Acorn was sitting cross legged on his bed in his jammies, watching a favorite video. I was sitting immediately behind him, my arms around him, my legs making a circle for him to sit in, and with a hint of a slouch, my chin resting on the top of his head, the little curls at the ends of his hair trying to tickle my nose. He used to sit under my chin like that during kangaroo care...

It seems so strange to me that time flies so quickly - it seems like only a few weeks ago that he was just home from the NICU - as of last week, he's had his trach 2 years, and it can't possibly have been that long.

It can't possibly have been almost 2 1/2 years since he was so tiny that his whole body fit easily between my chin the top of my bra, since he was small enough to fit entirely in my cupped hands.


 And when did he get so big? I carried him for about an hour this weekend, after he fell asleep on our way to a powwow; between sleeping and him being uncomfortable walking in crowds of adults, my arms were killing me, but this used to be my favorite way to hold him for an hour: 


At any rate...

Acorn has a few issues, and while they're minor, they will likely always be a risk factor for other things - asthma and scoliosis are our big worries right now, but we don't know how things will continue to unfold. We have a mostly healthy, really pretty normal toddler, in spite of everything he's been through, and that's the important thing.

But getting here....that's been a long road. Too many babies, and too many families, travel the same road, and I'm glad the March of Dimes is working on figuring out ways to reduce the number of families at risk for the things we've had to experience.

Tuesday, November 9, 2010

what to expect...

I think, if we have another child, that I may burn my copy of "What to Expect When You're Expecting."  By week 8 of the pregnancy, we'd already broken the rules in the book - we were 2 ultrasounds in, had seen his heart beating both times, and my morning sickness was so severe that I had been sent to a dietician. Pre-eclampsia is mentioned in the book, but there's no actual discussion on what happens if you get it.

Acorn is definitely not what they (or anyone else really) were expecting, and I think one thing I've learned from this is not to assume life will be typical.

So it is with Acorn's new doctor who, upon reviewing one test report, was mumbling the report outloud as he read it, and then exclaimed, "How rude! They called you unremarkable! Clearly that's not true, you're unique and wonderful!"  Acorn clapped and giggled. This doctor? Not what we expected, but definitely what we needed.

Later this week will be Acorn's second trachiversary - 2 years he's had his trach, and really, I can't imagine him any other way, though I look at the dozens of NICU photos on my wall here at work daily, including the time before the trach. It's odd, when you consider it, that we think of all this as normal - the tubes, the nurses, the doctors, the therapists. Again, not what we expected.

Expectations are all around us, but just for today, think about what life might be like if you decided to do something completely unexpected. Try it sometime - you might be glad you did.

Thursday, November 4, 2010

Special Needs Blog Hop: Love

This week's question: What do you love most about your Child?

I have to say, that's a hard question. I mean, I love Acorn pretty much as he is, as a complete whole, you know?

I think though, that what I enjoy most about Acorn right now is his voice. After not hearing him make any sounds for most of his first year and a half, and then needing a few months to work up to making a lot of sound, his laugh is always amazing to me, and hearing him cry, while it breaks my heart, is so much better than watching him cry silently.






Friday, October 29, 2010

Taking care of ourselves

Every now and then, someone talks about how we need to take care of ourselves to take care of our children. Shoot, I've even said it.

Still, it's often difficult to figure out where to carve out time for self care in the midst of what feels like an over-scheduled disaster....even though Acorn has fewer appointments than this time last year. I think part of the problem these days is that Acorn is at an age where he needs consistency...and getting him to bed has been a major challenge, so we have to be home by 9, and we're usually just getting home from work at 6.

Our solution, to some extent, is a standing Thursday night pattern: one of us takes Acorn to gymboree, the other takes off for the night. For my husband, it's his evening with his girlfriend; for me.....there's less structure.

And that is both good and bad. For a while it was an appointment with my counselor, and then a massage. Then my massage therapist fell off the face of the earth, and then I quit therapy...and then it was writing for a while.

This week I'm just in a funk, and I'm realizing that part of my issue is that while this schedule gets me out of the house....it's very isolating. I need time to myself, I need time with other people, and having a standing night for being out means that I can't take into account what I need most right at that moment - there's no time to plan for a change in plans.

Last night I went and got dinner, and went for a massage at a Chinese reflexology and acupressure place that takes walk-ins. Interestingly, they were playing Native American flute music, which is a change from their norm. Not as grounding as acupuncture, but a good start.

So....I think I need to get back to building meditation time in to my days. Or doing yoga or something - there's a new yoga place just a mile down the road. But meditation is shorter, and less expensive, and doesn't require packing up a bunch of stuff and heading off somewhere.

And I need to build more social time into my life. Not that I'm a terribly social person most of the time, but there's a point where I've spent too much time sitting in my little self-imposed exile.

I just don't know how to balance this. I have no idea. I need more sleep, and I need time for all this stuff, and time to play with Acorn, and time to fight over his IEP....can I clone myself?

Thursday, October 28, 2010

Tuesday, October 26, 2010

The thin veil

Trigger warning: this is a post about death. Religion and death, near death, possible death, and birth in a highly medicalized setting via emergency c-section to prevent death are among the topics. Tread lightly here if these things might upset you.


******



This is a special time of year - the year is working it's way down to the darkest point, and here in that limnal space between the dark of winter and the light of summer, the veil between worlds is thinnest.

As Pagans, we know that this is just a stage - the final harvest, followed by a time of rest, and then the cycle begins again. Death is just a part of life. For our family, Halloween is the Feast of the Dead, a time to honor our beloved dead, to send them well wishes and share a meal, and remember them. It's a time to be together as a family, to circle the wagons and remember our ancestors.

I am convinced that it is not the fear of death, of our lives ending that haunts our sleep so much as the fear...that as far as the world is concerned, we might as well never have lived.
--Rabbi Harold Kushner
And yet...this medically fragile special needs parenting life also means facing death head on, far more frequently than any of us wish. Among the support network we've built, there is a death every month or two; a rather unexpected one just in the last few days, in fact. Each one is a reminder of how easy death comes, how it sneaks right in where you are. How it can all be looking up one day, and all come crashing down the next, ready or not here it comes.

Because I could not stop for Death, he kindly stopped for me
--Emily Dickinson
This time of year is full memories for us of how close death can be - just 2 years ago, my spouse was struck by a car while crossing the street to catch a bus at the beginning of October, while Acorn was still in the NICU. And on Halloween, instead of putting on his pumpkin costume and taking pictures and preparing to come home, Acorn went into severe respiratory distress and narrowly avoided being re-intubated. Within days we were discussing that he needed to be on a ventilator, and within a week, plans were being made to place his trach.

All of those close calls, so near on the heals of Acorn's birth that summer.

Birth and death are not two different states, but they are different aspects of the same state. There is as little reason to deplore the one as there is to be pleased over the other.
--Mahatma Gandhi
A few hours before his emergency exit, I called the OB resident in, and told her that there was something horribly wrong, and we needed to change tactics - I was sure I was going to die. While she attempted to convince me otherwise, later analysis showed I was right; that was the tipping point where I slipped from just pre-eclampsia into HELLP syndrome. My kidneys started to fail (and my catheter bag contents went from yellow to brown to cherry red, scaring the crap out of the anesthesia resident), my liver started to fail, and my blood.....well, my blood started clotting in ways that it shouldn't, like in the test tubes full of anti-coagulant used for lab work, and in the bruises that were blossoming all over my body.


*****


In 2008, every member of my household narrowly escaped death.

It's hard to get past that fact this time of year. It's hard to get past death at Yule - the anniversary of my grandfather's death in 1989, the month of my birthday and the great-grandmother whom I shared a birthday with (who was my source of refuge many a night after school), the month of my spouse's grandfather's death. The dark part of the year is a hard one in our home.

Foolish is the man who says that he fears death, not because it will pain when it comes, but because it pains in the prospect
--Epicurus
But it is, after all, just a part of the year - it comes, and it goes, just a spoke on the wheel. I don't know how other faiths handle this part of things - the issue of what happens when we die was a big part of the sticking points that eventually resulted in my leaving the church of my childhood. But I know that for me, being Pagan has meant having a way to put all of this into perspective.

To every thing there is a season, and a time to every purpose under the heaven. A time to be born and a time to die [...] a time to kill and a time to heal
--Ecclesiastes
Death comes to us all, and it's not a bad thing, just another step down the road, another lesson to be learned.

Death is a part of our lives, in a very real way, because of the people we've met on Acorn's journey. More so than many kids, I suspect he'll have to learn about it early on, because of that fact. But it doesn't have to be something he fears, and that's a gift I wasn't given as a child.

Lo, there do I see my father.
Lo, there do I see my mother and my sisters and my brothers
Lo, there do I see the line of my people, back to the beginning
Lo, they do call to me
They bid me take my place among them in the halls of Valhalla
Where the brave may live forever
--The 13th Warrior
That is the lesson of Samhain - we must see and expierence the dark to really know what light is; they are two sides of the same coin. And as far as journeys go, we've hit some dark times, and it makes us appreciate the light all the more.

Monday, October 25, 2010

blood and vampires

Sounds like a good title for a post this time of year, don't you think?  I've got a really deep post on Samhain coming this week, but this was more immediate, and that other one needs another revision

Among the odd symptoms of this virus thing that's been causing all my joint pain and migraines and such has been a really unhelpful shift in my blood sugars....30 points higher than normal, which takes me from "normal" to "diabetic" if we're going strictly by the numbers. Changing diet hasn't improved them.

I have PCOS. Insulin resistance is part and parcel of that, and I've usually had really good blood sugars, all things considered, but it's something I keep an eye on - especially since I used to have hypoglycemic episodes caused by the insulin issues.

So, I drug myself into doctor #5 of this whole illness today (my kid isn't the only one with lots of doctors), my endocrinologist. And of course, after hearing the whole story, she's scratching her head, but wants blood - 5 tubes.

I used to call phlebotomists "vampires" - now I mostly just spew expletives under my breath, and remind myself that I can stop complaining when I go to phlebotomy school.

So, I've been at this blood draw thing a while. I know my body, and my veins, and I know how to make this work best. If it's one or two tubes, try a hand, but not up by the knuckle. If it's more, and you're not a rock star phlebotomist, try the forearm, because you'll never get my elbow. I warn them. They're deeper than they look, and they move - just because it's "right there" doesn't mean you'll get it.

This morning's tech was new at the endo's office.

Everyone else there remembers me - I tell them the same thing every time, and they remember all the bruises after Acorn was born, and looking for a non-bruised spot to take even more blood than the almost 4 dozen vials that had been done in the month before that appointment. I bruise easily; moreso back then, immediately after Acorn's birth, due to pre-eclampsia and HELLP screwing up my numbers.

New, when it comes to phlebotomists, is usually a bad sign.

I noticed this woman's bracelet right off the bat - a charm bracelet, each charm an icon of a Catholic saint. That often leads to interesting results when it comes to me and phlebotomists - the woman at my OB's office used to stop and close her eyes and pray before doing my blood draws, after her first experience with my veins.

I gave her the usual story. She said it would be fine. She found the vein in my elbow, and grabbed the needle...and then realized the vein had moved when she came back to insert the needle. She tried anyway....and failed. She did the "digging around in there looking for the vein" thing, praying (out loud) for Jesus to help her.  The needle hole didn't even bleed when she gave up.

Her second attempt went in my forearm, praying the whole time. She nearly blew the vein, but did get what she needed.

And then I drove to work, bottle of soda on my arm in hopes of preventing a hematoma. So far, no bruise, but it hurts like hell....

Friday, October 22, 2010

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.

Thursday, October 21, 2010

Special Needs Blog Hop

This post is a part of the Special Needs Blog Hop hosted by Autism Learning Felt and Super Mommy to the Rescue

This week's question: Introduce yourself & your blog so we can get to know you


I'm a full time working Pagan mama to Acorn, a medically fragile toddler. He has a tracheostomy, spent most of his first 18 months on a ventilator, and still sleeps with oxygen, but we're hoping to be trach free next year. He has a gtube (and gets less than 10% of his calories that way - a big improvement from being 100% gtube fed due to oral aversions) - his favorite food these days is tomatoes, with pepperoni being a close second. He wears an AFO and has some left side weakness that therapy is helping with. He has some sensitivities to textures and sounds but not enough for a diagnosis of anything. I blog about being a special needs parent, being a Pagan parent, and how the two overlap, along with blogging about more typical things in our day to day life - my addiction to cloth diapers, our potty training odyssey, the stresses of being a working mom, and more.

Tuesday, October 19, 2010

giveaway today - runes!

Hey all - go over to Mrs. B's Confessions of a Pagan Soccer Mom for a chance to win a set of my really nifty rune stones. She's hosting a big month-long Halloween bash.

More fabulous news later today. I'm so excited, I want to share, but I have to update the family first

Friday, October 15, 2010

More hardware and maybe less therapy

Acorn got his AFO last week.

For the record, while one AFO is cheaper than two, the issue of finding shoes the same style in 2 different sizes, the larger of which fits over this bit of plastic and metal, is a royal pain.

We noticed immediately that it improved his walking, which we didn't think was that bad before. It helps him keep his feet under him, instead of letting that foot slip out to the side. He goes a lot faster now, because he's more sure footed - his foot lands forward consistently, instead of going more and more sideways as he goes faster.

In other news, I'm working on drafting a letter to the early intervention office. Therapy with them can't go on this way. The SLP doesn't sign, and then complains that Acorn doesn't sign for her (you should see him around people who sign fluently!) - if she doesn't sign, how would she even know if he signed? None of the therapists or the teacher are taking hints from us that they need to give him time to process and not just move him without telling him what they want him to do (and really, I shouldn't need to get our psychologist involved to get this point across). Not sure where we're going with this - whether to just throw them out, or whether to get a mediator involved, or what.

Other than that, we're just hanging out, biding our time, getting over another cold, and watching the seasons go by.

Thursday, October 14, 2010

unmotivated

It's my night off. No child tending duties for me - dinner out, and a whole evening to do what I want, which only rolls around every other week. It's normally my writing night, or massage night, or something along those lines.

So what am I doing?

Sitting on my bed, playing solitare on my laptop while contemplating how to approach our latest early intervention disaster. It's so bad I'm not ready to write about it because I might start throwing things again.

You'd think I'd have a better plan, but no. Normally I'd at least be sitting in a coffee shop, but there are only 2 close by that are open past 9, and neither of them had any open chairs.

If my spouse ever gets Acorn to bed, we might yet have a few quiet moments to ourselves, before the nurse gets here at 11, but I'm not counting on it.

Wednesday, October 13, 2010

Virtues For a Special Needs Parent - part 4

The final installation on this series is on Mirth and Reverence. For me, these two have always been the easiest to tie back to that idea that "all acts of love and pleasure are her rituals" - it's easy to see mirth and reverence fitting in with love and pleasure, easier for me than some of the other pairs in the charge.

Mirth is a refuge for many special needs families - especially when we're together with other special needs folks. Who else gets the humor (ok, gallows humor, but we have to laugh about this stuff or cry) in things like feeding the midnight feeding to the bed for the third time this week? The amusement value in having a kid who tells off the therapist because he doesn't like her only really comes out when you realize that Acorn is non-verbal and rarely signs, and the therapist didn't know signs....but everyone else in the room knew what he said, and tried not to laugh until the therapist was gone. But the drama of having therapists, and trying to get kids and therapists to work well together is harder to explain to people who haven't been there.

Reverence, too, is part of this life. While we try to laugh at things....there are things that we just simply must take seriously. People we have to respect. And that's what reverence is all about - profound respect, awe, worshipfulness. There's reverence in our hearts for the little everyday miracles - in watching a child who once gagged at anything in his mouth devouring tomatoes, in hearing your child cry after months of silence, in a child's smile first thing in the morning. There's reverence in our thanks to the Gods for things gone right, and in our pleas to Them for things gone wrong.

It's also important to remember that while mirth and reverence are sometimes seen as opposites, they don't have to be - they're linked, and sometimes the most reverent thing to do is laugh. All acts of love and pleasure are her rituals, and laughing is a lot of fun, right?

So, go, enjoy your kids, and find something to laugh about today.

Monday, October 11, 2010

obviuosly you don't understand

I think the most useless thing anyone's ever said, in relation to Acorn and the level of stress that comes from juggling work, family life, and all of his various needs is, "well, everyone's stressed these days." The next statement is usually that I should try meditating, or that I shouldn't let stress get to me.

 
I assume the speaker is trying to find some common ground. But I don't think anyone who's not lived this life knows how really out of the box it is. And it's really not helpful to brush off my stress as if it's just an everyday sort of thing. To these people (because amazingly, there's been more than one in recent weeks), you think you know stress? Let me tell you about things that I have to stress over that I'm guessing you never do.  
  • You probably don't have upwards of 15 people a week in and out of your house.
  • You probably don't worry about whether or not these people wash their hands when they arrive, and what germs they've brought to share - in fact, you probably don't worry about germs at all, other than in the passing thought of, "if my kid gets that, I might have to take off work to run her to the pediatrician."
  • You've probably never had a child spend the night in the hospital for an illness, and certainly not for "just a cold." If you have had a child in the hospital for a routine illness it's been one or two days, not weeks, and it didn't involve a ventilator, ambulance ride, or IV antibiotics.
  • You probably don't have to deal with medicaid caseworkers (who are enough to drive a person insane, all by themselves).
  • You probably don't have to deal with a half dozen or more doctors and another 8 therapists and their schedules, plus trying to actually have some semblance of a normal life.
  • You've probably never had someone tell you it's your fault your kid doesn't eat like a normal kid.
  • You've probably never had to plan food for an entire weekend knowing that you can't actually get the food keeping your child alive at a grocery store.
  • You've probably never had 3 different doctors say that they can't do their thing until one of the others does theirs first, leaving you to duke it out and make one of them go first.
  • You've probably never had to take your toddler to a psychologist for their anxiety.
  • You've probably never woken up from a nightmare thinking something horrible had happened to your child. If you have, you probably walked down the hall and opened their bedroom door to peek, rather than calling the hospital at 2 in the morning, and then debating getting dressed and driving to the hospital (even though you had to be at work the next day) to actually see and touch your child to be sure the nurse wasn't lying to you.
  • You've probably never feared phone calls from your child's doctor or caregiver. And you've never had reason to, having never heard, "your child is fine now, but..." 
  • You've probably never heard a doctor say, "we had to give him some medication to keep his heart beating."
  • You've probably never performed CPR on your child.
  • You've probably never had to fire a caregiver for your child, knowing that it was better to fire them and call in sick to work than leave an obviously incapable person responsible for keeping your child breathing.
  • You've probably never wondered *IF* your child would breathe, eat, talk, walk, or play normally.
  • You've probably never required a doctor's letter to travel.
  • You've probably never told family you can't travel because you can't carry enough onto the plane, and the batteries keeping your child alive won't run long enough for the car ride.
  • You've probably never had to count hours of oxygen left to figure out if you can get home safely.
 
When you add all of those to the normal stresses of everyday life - getting to and from work, paying the bills, taking care of the house, taking care of "normal" kid things on top of  "special needs" things...I hope you can see where I could argue that I'm more stressed than the average person, and maybe cut me just a bit of slack.

You do that, and I'll cut you some slack on the less than helpful comments. Deal?

Tuesday, October 5, 2010

If you could stand where I stand...

I've been vaguely ill for about a month now, but I think that 3 doctors later, we may finally be on the path to a solution, even if I am still exhausted. Having had an extra nap today though, I think I now see why we have so many problems with our early intervention team. It's all about perspective.

We look at Acorn and see a child, whole and complete (with extra hardware, of course, but still, we see him as a unit, tubes and all). We see how far he has come. We see the everyday miracles - who knew breathing was so hard? - and the not so common ones (like a child so tiny his eyes were fused shut, learning to open them). We see his triumphs as proof that his weaknesses are improving. We see a child who communicates, even without words...and we see how ecstatic he is to communicate clearly when he manages to sign. We celebrate a child who nearly died (more than once), who is now happy and mostly healthy.

They look at Acorn, and see tubes. They see a child who didn't sit, crawl, or walk on time. They see a child who doesn't talk. They see a child who has not spent time around other children, and they believe this means he isn't "properly socialized." They see his faults, his weaknesses, and see his history as a tragic tale of things gone wrong. They see him as a disconnected set of broken parts, forever scarred by his experience, and inherently unhealthy because of it.

They see the holes. We see the process of building the skyscrapers that will one day cover the holes.

Its no wonder we don't see eye to eye on where he's going and how to get him there.

Tuesday, September 28, 2010

Review: Happy Heinies Pocket Trainer

We ordered these from Kelly's Closet.. I purchased a size medium in red. A variety of sizes and colors are available.




Materials: This has a PUL layer on the outside, and a fleece liner. We've been stuffing them with a microfiber towel we already had.

Closures: These snap up the front, which we like. The elastic is nice around the legs; not too tight, not too loose

Sizing: We ordered a medium, sized for 30-40 lbs.

Acorn is about 29 33 lbs (we got a new weight, and he's bigger than he was), and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

These fit ok - better than the Snap-EZ pocket trainers, because the elastic is a bit more stretchy, but the pocket feature makes these pretty bulky, even with just one stuffer.

Absorbency: Obviously, as a pocket, you can put as much or as little stuffing in as you want, but the whole point of trainers, IMHO, is to be less thick so that they can fit better under pants, and because you're not expecting them to absorb as much.  We've had problems with fluids escaping off the stuffer and wicking through the PUL at the legs on both of our pocket trainers.

Drying: Because these are a pocket trainer, they dry super fast.

Final thoughts: I really dislike pocket trainers at this point. We've had more leaks from pocket trainers than we've ever had from pocket diapers or from the AIO trainers. The inserts never seem to stay where they need to be.

They dry fast, but if you've got a smaller kiddo a pocket diaper might work just as well.

Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided. The link to Kelly's Closet is an affiliate link and I get a percentage of sales through the link.

Friday, September 24, 2010

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?

Thursday, September 23, 2010

happy blogaversary to me

When I started this a year ago, I didn't really know what my goal was, other than to write.

I'm still not clear on the goal, but I'm trying to go with the flow - trying to get both the special needs side and the spiritual side of things in on a regular  basis, and trying to talk more about what we're doing with Acorn, spiritually  speaking...which means being a little more organized about the doing part of it.

I'm still surprised every day that people actually read what I'm writing too. I know I shouldn't be, really, but it's nice to know that there are people who find what I'm writing interesting enough to read it more than just one day and never come back.

Anyway. Thank you for joining me on this journey, and here's to another successful year of blogging!

Tuesday, September 21, 2010

Review: Snap-EZ stuffable trainers

We ordered these directly from Snap-EZ.. I purchased a size 2T in Blue. A variety of sizes and colors are available, but there's no way to tell if the color you want is in stock in the size you want. This is a bit irritating when the first three colors you choose are out of stock in your prefered size...



Materials: This has a PUL layer, and the rest is made with a suede liner, just like a pocket diaper. We also ordered a fleece insert, which you can see in the photo.

Closures: These snap up the sides.

Sizing: We ordered a 2T

Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

They fit ok. We like the Happy Heinys pocket a bit better than these for fit - the elastic on those is a bit tighter.


Absorbency: At about an ounce and a half, the water started running out the legs of this trainer. The insert wasn't wicking water away from the spot where it was soaking through the inner surface, and as a result, the PUL at the legs was saturated long before the water soaked up into the insert.

The inner fleece was dripping wet - even 15 minutes later, there were still puddles that hadn't soaked into the insert. I wrang most of an ounce of water out of the shell itself after that, realizing that the insert was the problem.

We've had a couple of leaks that seem similar to this, even after a lot of washings. This may be a problem with the insert, though - see the final thoughts section of this review.

Drying: On the plus side, because these are pockets, they dry super quick.

Final thoughts: These shipped really quickly - we ordered Saturday night and had an email that they'd been shipped on Tuesday.

I've decided I'm not fond of pocket trainers. It's hard to find an insert that actually stays where it belongs, which is not a problem we've ever had with pocket diapers. I don't want to double up the inserts, since that defeats the purpose of a trainer. We've used the fleece insert from SnapEZ, we've used BG microfiber, we've used infant prefolds, and they're all subject to shifting in both this trainer and the HH trainer (next week's review).

One other thought...What's the difference between a pocket trainer and a pocket diaper that closes with snaps? It seems to me the answer is "fewer snaps" - these have no ability to adjust at the waist, which means if your child grows you have to buy a new size. That being said, it might be worth trying some snapping one-size pockets as trainers if your child is small enough to fit in them, rather than buying trainers.


Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.

Monday, September 20, 2010

Virtues for a special needs parent - part 3

The third installment in my series on virtues is Honor and Humility.

There are several ways we can take the word honor here. I've always assumed that Valiente meant for us to act as honorable people - keeping our word to others, treating others with respect, acting with integrity - a person of good moral character. .

True, we act with honor when we care for our children, when we treat all the teachers, therapists, doctors, and other staff members we deal with in a positive manner, even when we're angry with them.

But the more I think about it, the more I think that some of the other definitions of honor might apply as well. Some parents I know, for example, feel honored to be the parent of their child, to be allowed to learn from them. Some of us are respected in our respective communities for our advocacy, and that's honor too.

Some people even try to bestow honor on us as parents for taking on such a challenge (though I'm quick to point out that there isn't any other choice, so it's not really, in my mind, an issue of honor).

And that brings us to humility. If there's anything I've learned on this journey, it's humility. The word humble is related to various words for earth - we even use the phrase, "down to earth," to describe people who are humble. So, in elemental terms, humility means acting as one who is well grounded.



Humility is knowing when I don't know the answer. It's allowing others to help us.

It's knowing that the doctor standing there, telling me things about my child's future that he can't actually predict, isn't acting with humilty (or even necessarily with honor), and calling him to the carpet without being rude.

The pairing of honor and humility is interesting - it's easy to lose sight of humility when we're being honored for our actions. But balancing the two of them - being humble without being a door mat, and being aware of our standing in the community, and aware of how other people see the things we accomplish for and with our children while maintaining humility, can be an interesting line to walk.

Humility does not mean thinking less of yourself than of other people, nor does it mean having a low opinion of your own gifts. It means freedom from thinking about yourself at all. ~William Temple

Friday, September 17, 2010

life gets in the way

You'd think, being a working mom with a special needs kid, that I'd be better at scheduling...but you'd be wrong, at least when it comes to scheduling me into the calendar. Things have been hectic the last couple of weeks. It shows in my writing, and my artwork...and in things like sleep and emotional stability

Acorn has seen cardiology, urology, pulmonology, orthotics, x-ray, PT/OT/ST (those three are every week), the psychologist (that's every week too), we've scheduled an IEP re-do for next week, and he's seen 3 of his 4 school based therapists this week.

Acorn is now off O2 when he's awake (mostly) and we're waiting for a surgery date from urology. And we've gotten through all of those appointments without screaming, panic, or sobbing. I guess the psychologist is worth what we're paying her, but it's still pricey.

One of our cats is dying, and has to be infused with fluids several times a week, plus multiple vet visits. Kidney failure is not fun, and we're discussing at what point we say enough is enough. For now, he's not quite himself, but not suffering either, so we soldier on in what we know is a losing battle.

My back has been getting progressively more stiff the last couple months, and I've had 4 migraines in the last month, so it finally became obvious that I needed to stop and regroup on the self-care front and find a chiropractor last week...because my back and hips hurt so much it brought tears to my eyes.

Where am I supposed to fit in 3 adjustments a week for the next month? Luckily, the new chiro has appointments right up to 6, and is super fast and less than 3 miles from home.

They don't do manual adjustments - they use a gun thingy, and some applied kinesiology - so it's a little more holistic than past chiros I've seen (or, "they're more woo than most" as my spouse puts it). The doctor I see in their office was quick to point out that she's been getting adjustments for years, but was still having migraines until recently, and that they don't push supplements because they're not going to sell things they haven't found on their own and used first.

For all that it seems more gentle than the manual adjustments I'd gotten before, it sure hurts like a manual adjustment after the fact. I've given up and taken motrin several times, and no, drinking more water...lots more water....isn't helping any.

They have an office dog too, which is nice, and a kid-specific adjustment room decorated like a jungle. Since Acorn is at risk of developing scoliosis, it wouldn't be a bad thing to get him in too, but schedules....

Tonight we have nursing straight through the night. Much though I'd like a nice quiet dinner and a movie, I think our to-do lists are long enough that we need to get stuff done instead.

Tomorrow is Pagan Pride Day, and I haven't gathered up supplies for the craft I'm teaching, nor have I really put together my notes for the workshop I'm doing on toddlers and energy work.

Tomorrow is also karate test day. I'm going for my red belt, which means I'm at the half way point to being a black belt - take that, people who think that we can "fix" fat by exercising, or that all fat people do is sit around watching TV. The guy who broke into the house two winters ago sure regretted it, and I was only just barely an orange belt then.

Tomorrow is also, of course, chiropractor day again too. Ouch

Sunday is bead and stone shopping day, as K and I are heading to a trunk show for one of my suppliers.

And somewhere in there I have orders to fill, a website to work on, and an IEP meeting to prepare for.

Sleep? Who needs sleep?

Tuesday, September 14, 2010

Review: Snap-EZ AIO training pants

We ordered these directly from Snap-EZ.. I purchased a size 2T in grape - not that you can tell from the picture, but that's a purple trainer there. A variety of sizes and colors are available, but there's no way to tell if the color you want is in stock in the size you want. This is a bit irritating when the first three colors you choose are out of stock in your prefered size...



Materials: This has a PUL layer, and the rest is made

Closures: These snap up the sides. It's convenient, but I think I like the look of front snaps a bit better.

Sizing: We ordered a 2T

Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

These fit ok, and will fit for a while - the elastic is pretty gentle. They're not the best fitting ones we've got, and they're a bit poofy under pants.

Absorbency: Our first absorbency test on these was a dismal failure, 2 washes in. At about half an ounce, the water puddled, then ran out the legs. Even with breaks in pouring, puddles would sit for up to 15 minutes before soaking in, and pouring more water after it soaked in resulted in more puddles.

That said...we've not had any leaks in use. I'd be concerned that a heavy wetter might leak with these - see the next heading for more details

Drying: The site makes mention of needing to wash 5 times to reach maximum absorbency, which is a bummer for me. Washing with our normal diapers, it would take 2 weeks to get that many washes in. I'm sure that was part of our absorbency problem. They aren't the fastest drying, but they're not the slowest either.

Final thoughts: These shipped really quickly - we ordered Saturday night and had an email that they'd been shipped on Tuesday. I prefer these over the stuffable trainers made by the same company (which will be an upcoming review) - and I always thought I'd hate AIOs.

Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.

Thursday, September 9, 2010

Review: Stellar Transitions Trainers

We ordered these directly from Banana Bottoms. I purchased a "size 2T-3T" with a transportation print around the hips and white up through the wet zone. A variety of sizes and prints are available, as well as customs.




Materials: This has a PUL layer, and the rest is made from organic cotton and bamboo.


Closures: These snap up the front, which we really like. Standing changes don't work so well at our house, especially where poop is involved, and doing side snaps when laying down is hard.

Sizing: We ordered a 2T-3T, which should be about right.

Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

The waist on these is a bit loose, often leaving us with a plumber's crack effect. They won't stay up at his natural waist. A little more oomph to the elastic would be an improvement.

They're a very trim fit, and would go well under pants.

Absorbency: These soaked up every bit of the water in the absorbency test, but none of it wicked up the wet zone.

Laundry: The site makes mention of needing to wash 5 times to reach maximum absorbency, which is a bummer for me. Washing with our normal diapers, it would take 2 weeks to get that many washes in.

It hasn't taken that long to get absorbency, but these are the most wet of any other pair when we take them out of the dryer. Our dryer runs a sensor cycle to tell if clothing is done; it gets diapers dry, no questions asked, and this is the only thing still wet...often still very wet, not just damp. We usually have to leave them hanging overnight after they've been through the dryer.

Final thoughts: I think these are amazingly cute. If I could get past the drying issue, I'd probably buy more of these, but I don't usually have time to wait for them to dry.

Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.

Wednesday, September 8, 2010

Review: BumUnders Trainers

We got these cute trainers from BumUnders within a week of placing our order - one of the faster shipping times. I ordered a "size 2" in a zoo print. A variety of sizes and prints are available, as well as custom orders.



Materials: These are a cute print outside, velour inside, and a hidden layer of PUL through the wet zone. I love how soft the velour is!

Closures: I wish they had snaps - again, we're just getting started, and if your kiddo is pretty good about pooping in the potty, it might not be a big deal for you. The elastic seems to be nicely stretchy without too much bulk.

Sizing: We ordered size 2. Sizing claims size 1 is for infants and skinny toddlers, size 2 fits 2-4T, and size 3 first 4-6T.

Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

These are a really nice size - underwear sized, sitting low on the hips. I am not convinced they'll fit all the way to 4T, but I guess we'll find out.

Absorbency: In my standard 2 oz liquid test, the first little bit puddled in the velour, but once it started soaking in, all the rest of it soaked right in too. This trainer definitely won't hold much more than one pee though, so keep that in mind.

Drying:  These have never come out of the dryer still damp.

Final thoughts: These are really cute, and cut more like underwear than some others. They'd be great under pants, but not so great if you're still missing a lot of poops. They're super super soft inside too.

Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.

Tuesday, September 7, 2010

Why you should read my blog

My friend @kysilka posted this challenge:

I hereby challenge YOU to write a blog post on one of the following two topics.
 
1.  Ten Reasons Why You Should Read [Whatever it is I Write], or
2.  Why I Write. 

So, I'm pretty sure I won't get to ten reasons, but here's a good start:

1.  My kid is super cute, and while I don't post many pictures, sometimes I give you a little boost for the day:



2. How many Pagan moms with special needs kids are there anyway?

3. Even more than that, a Pagan mom with a special needs child who's medically fragile but getting better every day? I'm sure you like to cheer along with us for all our little successes, like eating:


4. If you've ever wondered about cloth diapers, potty training, and potty training without buying a zillion throw-away trainers, you should read my blog.

5. Or, if you think I'm occasionaly interesting or insightful. Or if you find me irritating. I mean, really, why should I justify how you spend your time?

Hm. That's 5. That's half way. Which I guess means this is a half-a$$ job, but that's what you get when I'm up to my eyeballs at work.

Monday, September 6, 2010

Virtues for a special needs parent - part 2

In case you missed the first post, I'm writing a bit about virtues - this series, in particular, focuses on the Charge of the Goddess, and how it applies to us special needs parents.

I have to admit, one of the reasons I broke these up was that I got through Strength and Beauty, and then sat and stared at Power and Compassion for several weeks, not even knowing where to start. Interestingly, it became clear to me the morning I started writing this what I needed to say - there have been too many examples this week to be considered coincidence.

This week's virtues from the Charge of the Goddess are Power and Compassion.

It may be different for other special needs families, but I see Power and Compassion as a really tense balancing act at our house.

Besides his pediatrician, Acorn sees more than a half dozen doctors, and another half dozen therapists. When he was in the hospital, there were even more. Many of these professionals are good people, who try to do the best they can for the kids in their care. But a surprising number of them get tied up in the idea of being "in charge" of Acorn's treatment plan to varying degrees, and forget that he's a child with wants and needs beyond their little corner of the world, and that we (his parents) have a wide variety of things to balance.

Acorn has a lot of anxiety about doctors, nurses, and medical procedures, as is to be expected. You would think that the various medical staff people that he deals with on a regular basis would be more compassionate - more willing to compromise, more willing to take things at his speed. "Power Over" is the usual way things work in the medical world, rather than "Power With."

Frankly, if they were more willing to talk to him about what they're doing before they start rather than, "mom, please hold him while I..." as they start pulling and pushing and making him do what they want, that'd be an improvement.

More than that though, we parents embody this balancing act as well. We have to discern which things in our children's lives we have power to change, which things our children have the power to change, and which things are not in our power at all. We have to know when to show compassion when our child struggles, and when to be stubborn and make them keep trying.

And we have to watch how we interact with other parents. When someone else feels overwhelmed in a situation far less intense than what we're currently experiencing, a lot of us struggle with compassion, and that struggle comes from wanting to control our own situation - from wanting the power to make our situation less intense, and from wishing the other parent had compassion for us and our struggles, instead of being so self-centered.

I'd like to think that I'm learning a lot about balancing power and compassion on this journey, but there are days I really wish I had more power and didn't need so damn much compassion.

Again, all acts of love and pleasure are Her rituals - use the power you have wisely, and try to be compassionate, especially when you most wish to not be.

Wednesday, September 1, 2010

Virtues for a special needs parent - part 1

In Doreen Valiente's version of the Charge of the Goddess, she says:

Let my worship be within the heart that rejoices, for behold, all acts of love and pleasure are my rituals. Therefore, let there be beauty and strength, power and compassion, honor and humility, mirth and reverence within you.

Just about all parents do things out of love for their children (even most really bad parents will tell you that they love their kids); we find joy in their smiles and their delight in the world is contagious. I'd like to think that most of us with special needs children have a little insight here though: we understand just how hard won some of those accomplishments are, no matter how big or how small.

What about that second bit though? That's an interesting list of virtues, and I've always found it interesting that they come in pairs. Over the next few weeks, I'm going to explore how they apply to Pagan parents with special needs kids.

First up is Beauty and Strength.

Whether or not we admit it, most of us special needs parents know Strength. It's strength that gets us through the hard days, that keeps us looking for the right mix of treatments and therapies for our kids, that gives us the power to argue with doctors, insurance companies, school districts, and more to get our children what they need.

It's strength that lets us keep going, day in and day out, strength that holds us together in the ER or the ICU, strength that helps us hide the tears (both joyful and sorrowful) when things catch us by surprise.

It's common for us to feel weak, because we aren't in control - but strength isn't about controlling the situation, it's about forging a path through the mess to get what we want.

And Beauty? I suspect most people think of beauty as hair and makeup and a stunning outfit over a perfect body - a culturally specific notion of all that, no less, that depends on your location and ethnicity and a million other things.

But I don't think that's the kind of beauty we're called to here. This is the beauty of the soul, the beauty of a sleeping baby, the beauty of the smile on a child's face when they finally do exactly what they were wanting to do. 

We're called to seek the beauty in the world around us, whether or not everyone else thinks it's perfect. My mom used to have a magnet with a pouting little boy, head and hands on a table that said, "I know I'm somebody, 'cause God don't make no junk!" - and no matter what God or Goddess or combination of Gods you worship, that's still as true now as it was decades ago when I first read that message.

All acts of love and pleasure are Her rituals. Hug your kids. Do something to make them laugh. Take care of yourself too - take  a long walk in the woods, soak in a bubble bath, sip a glass of wine - and remember that you and your child are beautiful, and you are Goddess.

Tuesday, August 31, 2010

Review: QTBunns Trainers

We ordered these directly from QTBunns. I purchased a "size small" with a really cute road sign print. A variety of sizes and prints are available, as well as customs.



Materials: Inner and outer flannel, a hidden layer of PUL, and several layers of terry for absorbency. These are serged along the edges, rather than having foldover elastic or some other binding.


Closures: No snaps here. The waist and legs have a bit of stretch to them, but overall are very soft.

Sizing: We ordered a small, which the sizing says, THIS IS FOR SIZE SMALL ALL-IN-ONE TRAINERS AND FITS 27-31 LBS. WAIST FITS 15-24", LEG OPENING FITS 12-17."

Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

They fit really well - not too tight, not too loose, and they go on and off really easily.

Absorbency: In the soak test (which you can read details of in a previous review), these may be my favorite. The flannel inner sucks the water right in, though the last little bit ran out the legs. The water didn't wick up the front or back at all, so I'm thinking it could have held a bit more in a second application.

Drying: These are not the fastest drying, but they're not the slowest either. They dry better inside out.

Final thoughts: These were among the least expensive we bought, at $9.50. We haven't had a single leak. I didn't think I'd like the serged edges, but they seem to work just fine. I really like the soft flannel, and if these had snaps, they'd be my go-to trainer. 

Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.

Monday, August 30, 2010

Sorry for the lag...

Yeah, I know I'm behind here, not posting much recently.

It's been busy :)

Acorn was sick - 3 doctor visits in 10 days, lots of extra oxygen, a chest x-ray, fevers reaching 104°....and then it was done, and things are slowly getting back to normal.

Acorn finally re-started OT, and so there's a new therapist who I think will do just fine. He also got a new PT, because the other one got promoted. We all think the new one is an improvement over the old one anyway.

We had a new nurse this month, she lasted 3 shifts before I fired her, and her 4th shift sealed the deal - any nurse who tells me, as my kid is coughing and sputtering, that she isn't comfortable suctioning in a moving car, and could I please pull over, is just not going to work. Frankly, if I have to pull over for her to suction, I could just do it myself.

We were supposed to be going to Pagan Pride Day, but it got rescheduled. Whether or not Acorn goes is now up in the air, because we'd arranged for no nursing that day on purpose - can't very well drag our very Christian nurses to a Pagan festival. He can probably go for part of it, though, because we usually don't have nursing all day on Saturdays.

We went to a powwow. I miss vending at events like this, but it's just not been feasible to this point. Maybe next year...or maybe I'll just get my butt in gear and get into a couple galleries instead. I'm still torn on that point, and on how I'd set up a booth these days if I had one, much less how I'd keep Acorn from wandering off.

We're also building out an Xtracycle - a cargo bike, which we're putting a child seat on for Acorn. First bike ride coming soon, we hope, and there will be a whole post on the bike building.

Potty training took a back seat to illness, but more review posts are coming too.

Friday, August 20, 2010

Review: Bummis Trainers

We got these trainers from Bummis, and purchased them locally at No Pins Required, our favorite (and really, our only, local brick and mortar diaper shop). I purchased a "size medium" in the classic Bummis jungle print - we've had 2 covers in 2 different sizes in the same print. A variety of sizes are available; I've only found these in white and the jungle print.



Materials: The outside is the typical Bummis knit. There's a hidden layer of PUL throughout the trainer. There's a flannel liner inside to help kids feel that they're wet. There are also 3 layers of terry in through the wet zone, which should be enough to contain a fairly substantial amount of urine.

Closures: I wish they had snaps - the longer we do this, the bigger deal the snaps become. The elastic is stretchy, but makes the rest of the trainer look a little poofy.

Sizing: Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.
 
We purchased a medium. They *look* huge. The sizing chart says SMALL: 9-14 kg (20-30 lbs), MEDIUM: 14-18 kg (30-40 lbs), LARGE: 18+ kg (40+ lbs). I looked at the size small, but in comparison to the medium, they are not really much smaller at all, and I wanted these to last for a bit. The poofy look kind of goes with the way they fit too - they seem poofy around the bottom, and I'm not really sure these would work well under clothes.

Absorbency: These were among the fastest to wick up the front and back of the wet zone, all the way up to the waist band. There was a bit of puddling at the leg openings, but it didn't run out the legs; it soaked in. That said, these trainers definitely won't hold more than 2 oz.

Drying: These are consistently one of the first dry, and I've never had a problem with them coming out of the dryer wet.


Final thoughts: These are ok. I think the lack of snaps makes this somewhat disappointing for us.

Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.

Tuesday, August 17, 2010

it's the little details

A funny thing happened on my way home from work last night. I almost stopped my car to talk to a total stranger - but I didn't, figuring it'd seem a bit odd, and besides, I was running late to get home to Acorn, who's been fighting of a summer stomach virus that is now settling in his lungs (yes, my kid is talented - no 3 days of fever with no other symptoms for him, no siree!)

I work at a Fortune 500 company as an engineer. The company's engineering & research campus is across the street from a museum complex that bears the name of the founder of the company; the development and testing areas are also on that side of the street, with a narrow winding road and a tall brick fence separating test facilities from museum. It's a popular place - there are both indoor and outdoor exhibits, and a lot of history can be found there.

Some days, I take that winding road over to the highway to get me home (though not the rest of this week - there's a big event closing down surface streets between here and there this next weekend, so it's the interstate for me). Yesterday was one of those days.

Driving up to the stop sign where tourists cross to one of the parking lots, I saw a woman pushing what looked like a really strange stroller. Getting a little closer, I was really struggling to grasp what it was she was pushing - too tall and bulky for most strollers, but there was a pink hat at the top there... and then suddenly the image snapped into focus:

I saw the ventilator tubing.

It suddenly all made sense - a specialty wheel chair, with tilt-in-space seating, with a plethora of medical equipment attached behind the seat and below it, and a girl in it, most of her covered with a pink blanket.

Funny how the details are sometimes the thing we recognize first.

We see so few other families with trach kids, much less with ventilators, that I was sorely tempted to roll down the window and say hi...

...but I think the police car behind me would have been upset about me blocking traffic.

Monday, August 16, 2010

it's not whether you win or lose, it's how you play the game

I was chatting with a friend of mine last night who happens to have a child who used to have a trach. She made a comment to the effect of, "oh, our story is so ordinary compared to some people's"

Ordinary.

That's right. She thinks of herself as an ordinary parent, with an ordinary kid, who just happened to have this little issue - it doesn't make her special, because it just was the way it was, and there was nothing else to do but keep walking.

And that's the thing. I think most of us special needs parents feel the same way - we're not something special, these children aren't given to us just because we're supermoms and superdads...they're given to us because they're children, and we are their parents.

The funny thing is, when she said all that, I stopped short. Because I think of her story as amazing, and I wonder all the time how she managed to make it all work out. I think that about a lot of the people we know - and while I could list them all here, I'd rather not, because these are their stories to tell:

Yes, Acorn has a trach...
but he'll eventually get it out, unlike many children.

Yes, Acorn came home with a ventilator...
but he isn't now, and we know people who will always need theirs.

Yes, Acorn's lungs weren't developed well enough to support his body...
but that's a problem that growing is fixing.
he's never had problems with his vocal cords
or needed surgery to reconstruct his trachea to keep it from collapsing
or needed surgery to move his facial bones around to make breathing on his own more managageable

Yes, Acorn has (had?) pulomonary hypertension...
but he never needed more medication than Viagra - the next step up is thousands of dollars a month
and he's never needed a catheterization to check for pressures

Yes, Acorn had holes in his heart - a PDA (which was closed surgically), and an ASD (which healed), and a VSD (which is minor and intermittent these days)...
but about 1 in 100 babies - maybe more - is also born with a congential heart defect,
and some of them die before anyone knows it's there
and others need multiple surgeries to get things working properly

Yes, Acorn was 100% g-tube fed for a while there...
but now he eats.
and drinks - from a bottle and a sippy cup
and will eventually not need his feeding tube

Yes, Acorn is a bit iffy about some textures and sounds, and yes, there are some SPD issues in our family that he might have inherited...
but he walks on grass
and eats tomatoes, in all their "mixed texture" goodness
and manages just fine in large crowds
and looks people in the eye, and interacts with them approrpriately

Yes, we're expecting a report from some tests that will tell us that Acorn has very mild Cerebral Palsy (which we've all suspected for months)...
but he walks
and runs
and colors (with both hands, if you push him)
and moves his tongue around in ways that make all his doctors and therapists believe that there's no reason to think he won't talk

Yes, Acorn spent a long time in the hospital...
but he came home.

I don't think, in the grand scheme of things, that we've had such a bad run of it. In the small picture, sure, there are points where I've been amazingly stressed and amazingly sad...but I think that's "ordinary" when you're a parent.

We're all ordinary people, and us special needs parents, no matter what the special need, are thrown into extraordinary circumstances. Each of us has a unique journey, but that doesn't mean we're alone. Special needs parenting isn't about numbers, it's about each of our individual children and their individual needs, and us parents keeping our sanity while we're walking this path.

Wednesday, August 11, 2010

Living in a multi-cultural world

Today is, for most Muslims, the first day of Ramadan, the lunar month wherein one fasts (no eating, drinking, or sex) during daylight hours. Coworkers of mine will be leaving shortly for the meditation room for their 1 pm prayer, and I'm really thankful to work in a place that allows such a thing without much comment.

I first heard of Ramadan as a child - maybe 8 or 9 - I was suffering that mental illness common to young girls, where horses are the only thing they can think of, and I was eating up every horse related book in the library, including "The Black Stallion." At the time, I think I knew that there were people in the world who were not Christian...but I'm not sure I'd ever met any in our small rural midwestern town. Baptists were exotic, as far as we were concerned, with their church and the Methodist church out on the edge of town - my dad wasn't convinced that going to the Baptist vacation Bible school wasn't a direct road to hell.

Acorn is growing up in a much different place. Detroit has one of the largest Muslim populations in the western world, and the suburb we live in has touted that it is among the most diverse cities in the US, having something like 46 different ethnic groups represented in its borders. Even our neighborhood has people of all different races and cultures of origin - I can count at least 6 just on our two-block-long street. His doctors even represent this diversity.

Not having grown up in such a diverse place, it's hard to know what to tell Acorn. Knowing that we're a minority, religion wise, in the midst of all this is even more complex.

But for today, I'll just stick with telling my Muslim friends - no matter where they're from - to have a blessed Ramadan, and to enjoy their feast tonight, and to continue to point out to Acorn all the different kinds of people we know, and yet how they're all still wonderful people - different colors, different ways of dressing, different ways of speaking, different genders, different family structures, cognitive and physical differences too.

Explaining why some of these things make people uncomfortable can wait for Acorn to be a little older.

Saturday, August 7, 2010

Review: Antsy Pants Trainers/Pull Up Diapers

We ordered these directly from Antsy Pants. I purchased a 2T size, with one insert. A variety of sizes and solid colors are available, but most of the packages can only be ordered in boy, girl, or gender neutral colors.

Antsy Pants - red, with black sides


Materials: Their website says, "The main diaper shell is polyurethane laminate (PUL) backing a soft polyester knit fabric. The absorbent pocket layers are made from cotton/polyester sherpa. The lining is a performance wicking material that forces moisture through the fabric into the absorbent layers, and the side panels are cotton broadcloth. We use Lastin at the leg openings; all other elastics contain natural rubber."  They do mention a cotton velour/bamboo liner version, but we didn't get that to try.

I did have some concerns with the materials - the synthetic "performance" layer against the skin in particular, which lets the child feel wetness for some amount of time before wicking it away. It doesn't *feel* like microfiber....but they also state in the FAQ on their site that in their testing, if you change diapers every 2 hours you won't have diaper rash. Since our intent with them is to use them as trainers, I fully intend for Alexander to be able to wear them more than 2 hours without going in them...so far, no rashes, but it does make me wonder.


Closures: These have snaps. The sizes are strictly elastic, which seems a bit odd at first, but works out well for ol and off - these are a lot like the more common disposable pull-up style trainers


Sizing: Acorn is about 29 lbs, and mostly wears size 2T clothes - he can wear most 18 month pants, but they're too short, and he can wear 3Ts but they're too long.

We ordered a size 2T, and it fits pretty well, with room to spare.


I'm not super fond of the fit overall though - there is no shaping at all between the legs. It's a rectangle of fabric running from front to back with stretchy on the sides. It looks funky, since it's proportionally narrower in front/back than I'd expect, and wider thru the crotch than I'd expect.  So far, this hasn't resulted in leaks, so it may just be that it's different, not necessarily good or bad.

Absorbency: My standard absorbency test goes like this:  A toddler/premium prefold (our typical diaper, 4x8x4 layers of twill) and a flat (a typical Little Lions birdseye weave, 27"x27") both easily hold 4 oz of fluid. They're really soaked at that point, all the way up the front and back, but not dripping - so that's at least 2 pees, maybe 3. Knowing that trainers are meant to hold one pee, I've been testing all of them by slowly pouring 2 oz of water in towards the front of a clean, freshly washed, dry trainer. Acorn has a hypospadius, so his urine doesn't come out quite where it should (yet), but this should be pretty close to right in between where a girl or a boy would go. Most are tested after the first wash, though I'll probably test some of them a second time if it's something we're expecting to improve over time.

This is one area where Antsy Pants really do shine through and live up to what sounds like a lot of hype on their website - I actually did pour 4 ounces of water into this one, without any additional stuffing. While it didn't wick up the insides like I have seen some of our other trainers do, it held every last drop, with no drips.

The water pooled on the surface of the liner, and then after a moment, was almost magically sucked in. With 4 ounces in there, I carried it to the dryer without any drips on the floor, rang it out (getting probably half the water back out), and tossed it in to dry.

These cand be purchased with an additional stuffer for night time use. I have to say I doubt we'll ever use it, even though we bought one - it just doesn't seem to fit in the pocket in any reasonable way, even after following all the directions. the stuffer is a microfiber towel that you have to fold, which then goes into their funky pocket  It's hard to explain, and I've been unsuccessful at getting photos, but there's 2 layers of fleece, plus the layer against the skin, and it's sewn in a really strange way that I, as a fairly accomplished sewer, just find baffling. One layer of fleece is sewn down, the other is sewn to the synthetic layer against the skin, and the stuffing goes in between the two fleece layers. The pocket opening for stuffing runs the entire length of the wet zone, and I have yet to figure out (even with 8 pages of instructions) how to get the stuffer folded and stuffed in there without touching sensitive bottoms.

Drying: All in all it dries well, as long as it's not snapped up when you're drying it - drying with diapers, it comes out dry at the end of the cycle. The odd construction must help with the drying somehow. Like most training pants, it has a tendency to not get quite dry if it's a smaller load in the dryer, or if the drying time is a big shorter.

Final thoughts: This is the only article of clothing I've ever bought that came with an 8 page instruction manual. The fact that it's a diaper with an instruction manual just adds to the oddness of this.

These also took the longest to arrive - they arrived after the package from Alaska, and after the package from Canada (which had to go through customs!), both of which were ordered the same day as these. 

These were the most expensive trainers or diapers we've ever bought, at $27 each. Buying them in bundles, you can get the cost down to about $21-$22 each. I have to admit, we're cheap - that's one reasons we have stuck with mostly prefolds, and one reason we've mostly bought used diapers. Finding any trainers used has been a real challenge.

I suppose if you're fond of sized diapers, or have several younger children to grow into them, it might be worth that price, but I'm not entirely convinced - though the absorbency may be worth it if you're having a lot of misses, or if you have an older child with bedwetting episodes. You'd have to have a fair amount of cash to invest to just get these.

For all their oddness, I like them, I'm just not sure I like them enough for the price.



Disclaimer: these trainers were bought by me, and this review is my personal opinion of them. No compensation was provided.