bits of life

as i have time to gather them to show the world

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not the best state of mind to write lyrics

Abigail’s music therapist offered to write (or help write) a song for Abigail.  I’ve been putting off writing the lyrics.

I wrote some tonight.

sweet baby girl,
your deep brown eyes and wide innocent grin
make all the dark things disappear
i don’t want you to go

not ever, but especially not yet
i didn’t get to show you so many things
or watch you grow up
or walk
or say words

there are so many times i should’ve stopped
whatever else i was doing
to spend more moments with you, staring at your face,
letting you poke me in mine
it doesn’t seem fair that someone as perfect as you
had to have such an imperfect mom

wait, baby.  don’t go just yet.  i need to sing to you again
read to you, hold you, touch your delicate fingers,
watch you sleep and listen to you breathe

special hearts don’t make it in this life.
i’m sure heaven is nice or something.
i know you deserve better than this world
but i still don’t want you to go
not yet
let me be selfish just a little longer, sweet Abigail
your smile is light and happiness

every day a little darker, filled with moments of joy and worry
lacy blue veins decorate your torso, spread to your fingers and toes
another sign that you can’t stay
i feel you growing lighter in my arms
your skin is getting delicate
and there’s no cushion underneath it when i pick you up
and i worry it hurts you
i worry your bones will poke through

i don’t want you to be unhappy
i don’t want you to be uncomfortable
but i don’t want you to go

not yet, baby girl.  just another little bit before i have to say goodbye.

 

At least they’re better than what I was considering writing the other day when I was still exhausted and in pain from the flu, and watching my kids suffer from symptoms too and being unable to fix it for them.  Those lyrics consisted of two words:  

f*#& life.

I’m probably not up to writing decent lyrics right now.  I’ll have to redo them when I’m feeling happier and less… honest.

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Decisions Nobody Wants to Hear About

We met with Abigail’s medical team a couple weeks ago when we were discussing transitioning her into hospice care at home.  It seems there are a lot of uncomfortable decisions you have to make when your daughter is dying.

How long do we want to prolong her life (within a certain limit) at the expense of her comfort?  How much comfort and choice do we allow Abigail if her choices are shortening her life even further than the few months the doctors expect she has left?

Do we keep her on the hardcore diuretics that keep her lungs clear but make her miserable?  If one of those diuretics messes with her electrolytes, do we allow a nurse to poke her every day and draw blood, knowing that it’s terrifying and agonizing for her with her sensory issues?  Or do we stop the blood draws and let her heart possibly go into arrhythmias from unbalanced electrolytes and kill her quickly and unexpectedly, but less unpleasantly than allowing a months-long decline?  Or do we keep her on the unpleasant arginine chloride that makes her barf constantly, to the point that her esophagus bleeds?

Do we plug her feeding pump into her when she stops eating more than three sips of food per DAY?  Do we try to treat the liver failure that’s resulting from her heart failure?  Or do we give her medications to make her more comfortable with the organ failure but which might speed things along?

I don’t feel like sugar coating anything.  Life isn’t all garbage, nor is it all sunshine, rainbows, and unicorn farts.  We’re going through a tough time right now.  I’m not going to be sane for the next while.  I won’t get enough sleep and I might not remember something you told me or return calls.  Hugs are probably nice… but for later.  I won’t process them right now.  I still love my friends and family, but I’m not up for regurgitating devastating information over and over again for each person that asks.  And I don’t really feel like crying in front of anyone, either… that’s private for me and Josh.

If you catch me, though, feel free to talk about other stuff.  I found a way to turn wool yarn (reclaimed from sweaters) back into wool roving.  Josh made a couple felting needles for me, and they work well.  Screw buying overpriced kits at craft stores.

Hojary and Aiden frankincense smell nicely pungent, but frankincense from India smells like ham.  Myrrh smells like old mushrooms… just so you know.

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Disjointed Connections

I can’t type much because the kids need attention, but I wanted to post something before life’s distractions pull me away again.

I’ve heard so much over the past decade or so about society’s ills stemming from the ease of electronic communication.  I’m neither supporting nor denying the claims of things like text speak dumbing down our communication; partly because it’s more complicated an issue than I could address, and partly because I don’t have much first hand experience with the affected generation.  I do, however, have some opinions about the connectivity of the world in general, and how it relates to the psyche of an individual and of society.  

We live in an age where we can very easily share information, and communicate (on some level) with multitudes of people.   We can effortlessly obtain items from all over the world; in fact, we often have no concept of the origins of most of our material possessions.  Who made your broom, your car, your shirt, your socks, your underwear, your pencil, your lamp, your curtains, or the multitude of other items you use on a regular basis?  How were these items made, what kind of conditions do the workers in the factory face, what’s the environmental impact of these things, and how long should they last before you’ll need to discard them and purchase replacements?  I can’t answer these questions about most of the tangible products in my life.  That’s not something I think I should feel guilty about, but it does raise some concerns.  I’m not going to spend time detailing the planned obsolescence of products so prevalent in our global society; that’s rather a given in this age.  I’m also not suggesting a radical shift to using mostly handmade things; machines and assembly lines make production efficient, and tend to raise the standard of living for many.  I do believe, however, that living in a disposable culture has considerable effects on us.  

Our valuation of items tends to decline when we live in such a culture.  Rather than getting derailed by outlining the details here, I’ll post a great link here to an illustrated story I remember watching a few years ago:  http://www.storyofstuff.org/movies-all/story-of-stuff/  Stuff costs more than what we pay for it at the store… but we become numbed to the real price and impact.

Our valuation of people and relationships seems to have experienced a similar decline.  We no longer spend so much time in face to face conversations, where we get immediate nonverbal feedback from each other, sharing emotional exchanges that can’t translate so easily into texts or tweets.  This NPR interview with Sherry Turkle, a clinical psychologist and the founder of MIT’s Initiative on Technology andSelf, brings up some of the concerns about emotional impacts of our changing methods of communication:  http://www.npr.org/templates/transcript/transcript.php?storyId=163098594  Turkle states in the interview that as we move away from face to face communication, we lose “the skills that we get from talking to each other face-to-face, which are skills of negotiation, of reading each other’s emotion, of having to face the complexity of confrontation, of dealing with complex emotion, of dealing with confrontation.”   Distant types of communication allow us to be cruel with little thought; sure, we can rationally conclude that our harsh comments will likely cause pain in another human being, but because it’s not immediately in front of us, the concept of our words being harmful becomes more abstract and therefore easier to ignore.  We also miss out on many good and subtle traits about people, things that could enrich our understanding and compassion for each other.

I believe that this separation of our words from emotional consequences, when combined with societal institutions which prioritize the preservation of a system far above the needs of the individuals, leads to a pathological indifference and lack of empathy for others on a massive scale.  Once society becomes sociopathic, these traits are seen as normal and therefore healthy, making it more difficult for many to spot any problem at all.  Public schooling is one such institution, of course (although others exist as well), and John Taylor Gatto has done excellent research on the history and impact of modern schooling.  http://www.johntaylorgatto.com/chapters/15e.htm  This chapter of his book The Underground History of American Education mentions some of the unhealthy tendencies that naturally result from institutions being run in a certain way, and therefore become the social norm.

Mental illness in general is still stigmatized on the news and misunderstood by most.  Even as the neurodiversity movement has gained momentum, disparity between two “sides” of those who support it and those who discount the concept has increased.  I would personally rather it be considered a concept than a rallying cry.  Differences in the human brain are not starkly black and white, and my idealistic side would have me believe that a natural spectrum of human diversity should be a widely accepted given.  I don’t think that deviation from a statistical norm should be the basis for labeling a pathology, although I do acknowledge some of the confusion may lie in different definitions for the word (one of which refers to variation from normal, rather than from a healthy or functional state).  Labeling a difference a pathology, at least in my mind, should be based solely on its hindrance, not on statistical averages.  A widespread trait held by the majority of a population can, in fact, be unhealthy, harmful, and therefore pathological in my book.  In those specific cases, deviation from the norm would be considered healthy (in cases where the deviation led to more functionality and more health).

We all have different experiences and viewpoints.  Our differences in talents and observations are valuable when we share them with others, and learn from theirs in turn.  Even those who have a statistical variation that is and should be considered a mental illness (based on functionality) have valuable insight to offer.  If we could interact with everyone on a more personal and emotionally respectful level, our diversity would become a stronger bond that enriches our world, rather than a divisive obstacle that hampers understanding and kindness.  We could, in that same vein, become more aware of the products we buy and use, and of the diverse background of the origins of our stuff - not to feel bad about what we or someone else purchases, not to be overwhelmed with the massive impact of our lifestyle, but to simply have a better understanding of how our actions and our decisions affect the whole world.

It can be difficult to internalize the things we can’t see.  That’s why I believe connection and awareness are so crucial if we’re concerned about any of “society’s ills.”  The truth of the matter is that we do have an effect on each other and on the environment, no matter how blind we might be to the impact.  A small impulse that we act on and immediately forget could drive another individual to tears, fund the killing of a single endangered animal, or pollute a village water supply.  A similar impulse could also bring hope, save a life, or increase economic opportunity.  We’ve all got a lot of stuff going on in our lives, and it’s not realistic to overwhelm ourselves with information on the effects of every one of our actions, words, and purchases.  We can start somewhere, though.  We can get to know an acquaintance a little more personally, smile and look a cashier in the eye, and give some supposed jerk the benefit of the doubt.  We can find out where one of our items comes from, maybe learn how something is made, and even consider buying a sturdier, more sustainable version the next time something breaks and needs to be replaced.  We could even consider trying to make something ourselves… not to save money (because it likely won’t, at least at first), but because it increases our connection - to the things we touch, to other people (whether in the maker community or those for whom we make an item), and to the world around us.

I’m trying hard not to quote John Donne or Leo Tolstoy here, but I want to emphasize how intrinsically we’re all connected to each other and to the earth.  We can do little things to counteract the outside forces that harm those connections, and our example can encourage others to do the same.  Becoming more aware and respectful of our connections leads to a happier, healthier, and more fulfilling life for each of us.  

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a little about heart failure

Abigail was diagnosed with diastolic heart failure a couple months after her last open heart surgery.  Her heart isn’t relaxing between each beat, which means blood isn’t being pumped very efficiently because not enough of it is rushing into her chambers before the next contraction.  We brought her home to see if her stats would improve and because hospitals really stress her out.  Her heart rate at the hospital was 140 even when she was asleep.

Some of her stats improved at home and she was much happier (heart rate was down to 110).  We were unable to taper her off the oxygen, though.  Abigail’s chest x-ray was bad enough at her most recent checkup that they admitted her to the hospital on the spot.  They were able to get her pleural effusions down significantly with IV diuretics.  They then switched her to oral diuretics in the hope that the fluid around her lungs wouldn’t get any worse (since we can give her oral diuretics at home).

Her chest x-ray from last night was worse.  She’s back on IV diuretics and will get a chest tube put in if her scan from today isn’t better.  We were hoping we could take her home this week, but that no longer seems likely.  

Josh and I have concluded (after much discussion with her medical team) that a heart transplant won’t be right for Abigail, due to her other health challenges and complications.  Her odds of survival wouldn’t be even close to the sunny 80% others might have with a transplant, and the lengthy testing process with all the appointments, interventions, and labwork would make her absolutely terrified and miserable.

Heart failure isn’t typically something that resolves itself.

We’re grateful for each day we have with our beautiful Abigail.  She’s such an adorable sweetheart and has enriched our lives in more ways than I could ever list.

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I’m still here

I remember playing young Sally in a tiny community theater version of Sondheim’s Follies over a decade ago.  Stephen Sondheim, aside from being one of my favorite composers for his hauntingly lovely melodies, is a master at articulating human emotion through lyrics.  Even without a career in entertaining, it’s easy to relate to such phrases as, “Good times and bum times - I’ve seen them all and, my dear, I’m still here.”

Abigail chewing on a comb

Kids need lots of attention.  Mostly happy, often naughty.  Insurance and medical bills driving me nuts, need to figure out some things… but not right now.  Time to give Abigail her meds.

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The (questionable) value of sanity

I miss Abigail.  I don’t think those words can really convey my feeling accurately.

She’s been in the hospital for almost two full months now, following her Fontan operation.  There was hope she’d come home yesterday, but she didn’t.  There was hope she’d come home today… but a call from one of her doctors confirmed that it’s not going to be today.

Josh and I have been chronically short on sleep for over three years (the girls turned three in February).  Even on nights when sleep should be possible, it seems that we’ve lost some of the ability.  I don’t fully remember what life was like before we had our three sweet high need children… but I suspect it was a little less consuming.  It might sound ridiculous that I’m not even certain, but I suspect we’re under a fair amount of constant stress.  If something becomes a way of life, it’s difficult to see outside of it.  As I learned from my experience enduring four years with my manic depressive ex, once grossly abnormal becomes the norm, it’s tough to even see which way is up.

The nights of rushing Abigail to the nearby hospital to get her NJ tube replaced while she’s gagging, throwing up stomach acid, and choking in her carseat in the back, followed by holding her down on a cold x-ray table while techs force a tube through her nose while she cries and screams so hard that she turns deep purple are gone.  I’m not sure their impact has disappeared, though.  It might have, were she our only child at this point.  We’ve been blessed, and I really do mean blessed, with three children on the autism spectrum.  Benjamin and Lilith don’t have heart conditions, but they’re mobile, get into lots of stuff, and need constant attention.  If they don’t get it, they climb on me or Josh in their sweet, needy, clumsy way, with little feet and hands and elbows leaving various bruises.  They’re not malicious, but they are rough.  Sometimes they’re loud when they’re running around and hollering to blow off steam; noises are incredibly hard on Josh, whose (recently discovered) mild autism and the associated sensory sensitivity turn the kid noises painfully mind jarring.

He has no down time.  I have… very little down time.  I get so many sweet moments during the day with our darling little naughty butts.

There comes a point in most experiences of warrior parents (the ones who deal with a special needs child) where things stop causing conscious worry or sadness.  I know they still have an effect… they always have an effect… but after awhile, the little or big things that come up, medical emergencies and the like, are just more of the same.  They get swallowed along with our ibuprofen, without much thought, free to have whatever short or long term effects they may.  We switch into autopilot mode, just needing the relevant information so we can do what needs to be done.  She can’t eat by mouth any more because of her paralyzed vocal cord?  Okay, fine, so how do we work the feeding pump?  She needs another heart cath?  What time should we be there and where’s the paper to sign the permission?  When do we stop feeding her the night before?

I think sanity has something to do with one’s connection to reality.  Reality is something that happens outside our cave.  I don’t have time for that stuff; I’ve got all I can handle with making sure people’s immediate needs are met.  Keep kids fed and changed, keep on top of medical appointments, keep kids from actively destroying the house… what, sleep? I haven’t showered in a week or two… maybe I should soon so I don’t get all itchy.  Oh and my pathologically creative brain is about to explode, thanks to my ADD, because I have no creative outlet.  I’ll trade some sleep to make something for my kids.

If I were to keep a strong grip on connection to reality, I’d be so overcome with emotion that I’d be unable to function.  The slight emotional disconnect makes it possible to keep going, to do what needs to be done right now, and worry about the rest of the stuff later.  No, I don’t care if I happened to grab two different shoes when I hurried out the door to the grocery store, as long as they’re both comfortable.  No, it doesn’t bother me that my hair is a mess or that I couldn’t find my bra.  I need diapers and formula for Abi, and probably some food for the rest of us that doesn’t take long to cook, because the other two kids wreck things if I’m in the kitchen for very long.  The other stuff, like what others might think, is often so far down the priority list that it doesn’t even exist for me.

Hopefully, Abigail will be home soon, and life will eventually ease back into whatever is normal for us.  If my pressing loneliness for adult conversation and connection becomes loud enough to cause problems, I do whatever I can within my limited means by reaching out in an online community, maybe making something fun for someone else.  As long as it fulfills at least two needs (creativity outlet and connecting with others), it’s efficient enough for me to make it worth trading a little sleep over.  Sometimes I’m just a Sim with the green bars showing my various needs.  Keep up with my kids’ needs first, and fill my bars a bit if they become low enough to stop me from doing what I need to do.

It’s probably not sane.  At this point, I really don’t care.  And, for the record, I love my family and my life, and I wouldn’t change a thing about it.

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Fat Mermaid Embroidery Pattern

I was reading a thread on the Regretsy forums, and it was full of pictures of large, sexy women.  I was inspired to draw a fat mermaid on Josh’s ipad.

I keep intending to finish the drawings for actual embroidery patterns that I can sell, but… it’s difficult.  My art is usually too complicated and not cute enough, and by the time I get little kid fingers off me and away from the ipad (it would be VERY BAD if it got broken - they’re clumsy and there’s no way we could afford another one), it’s late and I’m tired.

At any rate, I was able to do this quick one.

Fat Mermaid Embroidery Pattern

I shaded it with a little gray.  I didn’t add color.

Fat Mermaid

Fat Mermaid Embroidery Pattern by Rachel Faul is licensed under a Creative Commons Attribution 3.0 Unported License.

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“Borrowing” the kids’ watercolor paint

It’s been years since I painted a picture in only watercolor.  Clearly I’m still not getting enough sleep.  This one is called “Rainfish and Umbrellatongue.”

I used pencil to sketch out the figures in the embracing family before painting this one.  Sometimes life feels like this.

Yeah, yeah, I don’t quite look like that and my arm isn’t actually conjoined with Josh’s in real life.  Just call it an abstract representation.

I think I’ll call this one “Creepy is easier to paint than realistic, especially when you’re tired and a certain 3 year old is still awake and hollering at 11pm because she opposes the concept of bedtime”

I’m out of practice, I worry I don’t even know what art is, and I’m still unsure whether I have enough emotional bandwidth to even care.

And yes I know her eyes are staring in different directions.  Undead and all, ya know.

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Backdated Projects

I’ve done so many things that I meant to post.  I’m taking some time to upload them and backdate them to the dates on my phone.

If you’re wondering why my blog posts go back before I started my blog, that’s why.