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.