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Behind the disheveled curtain

23 Jul

…or that period of time when my house was a holy mess…

Today, I read a post from a dad about how he had blamed his wife for their messy house, then was enlightened.  You see more of these articles lately, menfolk backing up what the stay-at-home mom does.

In a way, it’s sad they have to defend their wives and their less-than-showplace homes.

But sadder still, is reading the comments.  Because it’s not men saying “Ugh, wimmen need to be barefoot making sammiches and mopping floors, no excuses!”  No, it’s women stating how they have 2,3,4 kids under the ages of two and they prioritized their home and housecleaning and there is no excuse for living in FILTH!  That if a 4 year old comments that your house is messy, then it must be a filthy germy biohazard full of feces.

Like I said, sad.

Because once again, women are pitting themselves against other women.  Mothers are trying to one-up other mothers.  “Look, I can do it ALL, you can too!”

But some of us can’t.

We just can’t.

I can’t.

I have never been the neatest of people, I will own that.  I can organize with the best of them, but I also end up with piles of clutter here and there.  Clutter doesn’t equate to filth.  I would just clean around the piles, shift the stacks of paper on my desk, wipe the desk clean, put stacks of paper back more neatly.  As a young mother, I may have had piles of clothing out, but they were the clean clothes that I needed to fold after the toddlers of destruction were not present (why is it so much fun for toddlers to unfold folded clothing).  I was a stay-at-home mom of one, then two, then three.  Sometimes, things would slide, then I would catch up.  But while our house was sometimes a bit of a disaster, it was never filthy.

And then, Maura came along.

This is where someone goes “Oh sure, excuses.”  Well maybe, if you consider post-partum depression, then depression and anxiety, as “excuses”. If you do, well, go along with your clean home and heartless soul, this story is not for you.

But yeah, Maura.  Maura rocked my world.  And I was tired, overwhelmed, trying to parent four little kids, realizing that there was something wrong with my baby girl, and it all got too much.  Everything got to be too much.  Anxiety and depression, they’re a pair of right bitches. Really, it’s amazing how I was able to get up every day, dress kids, get them to places on time, feed them semi-healthy meals while trying not to ruin their childhoods with my struggles.  I put blinders on to my surroundings, put on a happy face for the outside world and went into survival mode.  For like three years.

Do you know what it’s like to come out of survival mode and realize your home is completely disheveled?  That you’re surrounded by chaos, and realizing that anyone who walked in the door would probably judge you as a horrible mother?  Forget that I was taking my child to doctors and therapists while trying not to fail the older three kids, and somehow they were all happy and decently adjusted – no, that wouldn’t have played into the situation.  I should have rallied the children, made cleaning fun, and teach them responsibility!  – or so the comments sections of other posts would tell me.

Other mothers have children with special needs and clean homes!

No excuses!

You can do it!

But I wasn’t them.  I was me.  I was me, and overwhelmed and not sure where to start digging myself out of the hole I was in, and still having to take care of four kids, feed them, nurture them, while trying to make the little girl with issues thrive and achieve. It was easier to ignore the mess, ignore the piles, ignore the clutter.  And the more I ignored, the worse it got.  My house was a reflection of the struggle I was going through – but no one outside of my very inner circle could have realized that.  To others, it would have just been a messy house.

This went on for about three years.  Three years of feeling horrible on the inside while coming to terms with our new realities.  Three years of coming to acceptance with Maura’s issues, and growing in other ways.

I did manage to finally climb my way out of the hole, with a lot of help from my husband (who has always proved to be amazing), and some help from a therapist and a bottle of Prozac.  I decluttered, and organized, and moved overseas, and moved back.  I went from having too much stuff to realizing I may have decluttered a little too much in some areas and had to go buy new curtains because I donated all the ones we weren’t using.  I am still going through, making donate piles, organizing life.

My house is still not picture perfect.  It never will be.  I live with Maura, and she needs constant supervision or else we walk into things her trying to cut the watermelon with a giant knife, or bathroom flooding.  And to be honest, if I spend all my time cleaning, and trying to keep things perfect, then that’s all I will ever be able to do.  And I will get very grumpy.  I don’t want my life’s achievement to be the cleanest house on the block.  I just want a happy family and happy life.

So if you stop by and my house is looking more than a little lived in, it’s not because I don’t care.  It’s because every day is its own challenge.  Every day I get up and fight inner demons of depression, anxiety, and general overwhelmedness, and keep moving forward.  I do the best that I can – not the best that you can, not the best that she can – just the best that I can.

The point of the story?  That sometimes, probably more than we realize, the state of a mother’s house is a reflection of her inner state.  Don’t judge a mother by her clutter.

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So far, so good

21 Jul

Maura’s been doing well so far with the seizure med weaning.  This is Week Three, and we’re going down 1 ml per week, so I’m guessing we’re hitting the point where if something’s going to happen, we’re going to start seeing it.

Now I have to knock on wood because I feel like I’m jinxing things.

Okay, wood-knocking over…

Like I said, Maura’s doing well.  She’s been chatty still (and chatty enough that friends who hadn’t seen her since January noticed how much more she seemed to be talking), balance is still good, no odd blinky faces.  So we’re carrying on with summer – which so far is a combination of watching too much My Little Pony, wandering about the yard playing with dolls, and thinking she can mix up her own things in the kitchen.

So yeah, we’re also now working on “cleaning up the mess you made emptying 14 packets of drink mix onto the counter” and other such things.

Meanwhile, I am still working with a personal trainer, who is still forcing me to curse at him at some point in the work out.  But I’ve lost some body fat and gained muscle, and am less wary about hefting Maura off the ground and injuring myself, which is the main point of it all.  Now if I could just stop shoving the wrong foods in my face, maybe I can lose more weight.  I’m looking at you ice cream and Coca-Cola.

(Disclaimer for if my personal trainer reads this – Josh brought home the ice cream.  His excuse was “It’s hot out.”  Which it was.  The Coca-Cola was my own fault.)

I am also realizing that it’s now been a year since we’ve moved here.  It’s still not Ireland, but it’s not a bad place to be either.  Especially in the summer.  I’m now regretting getting rid of all my shorts while we were in Ireland, because I could have used them this summer so far. I am also still in love with my big American washer and dryer.  That has not gotten old yet!  I miss the public transport in Dublin, the trains and buses and taxis.  I miss the rainbow that constantly appeared behind my house, and our fabulous neighbors next door.  I miss old buildings, and the landscape, and the people, and the pace of life.  But the other day, as I drove through the sun here, I thought “You know, it’s not so bad here.”

Now if you’ll excuse me, I must go put towels in the big American dryer, where they’ll come out soft and fluffy in forty-five minutes.

Nope, never gets old.

Why my daughter may never receive a diagnosis

7 Jul

This topic came up among friends last week, when I was chatting with them about how we’re starting the med-weaning process – the fact that Maura may never receive a diagnosis.

“But why not?” people have asked me over time.

For those new to the game here, the answer isn’t because of lack of trying on our part.  We have run tests.  So many tests.  Gene tests, metabolic tests, the more generic tests and the more specific tests. Whatever you test with blood and urine, we’ve tried to do.  She’s seen a neurologist, geneticist, pediatric psychologist, neurogeneticist, more neurologists.  Her MRI has been reviewed several times.  Her features have been noted time and again, and I’ve filled out more developmental questionnaires than what’s probably good for my psyche.

Where we’ve drawn the line is more invasive procedures, like the muscle biopsy.  That will only happen if we have good reason to do it.

“But how come they can’t find anything?”

My standard answer has been that they’re doctors, not God.  They are human beings with only so much knowledge.

Lately however, another fact is coming into play – some just aren’t that interested.

See, what Maura has isn’t medically “sexy”.  She is a happy, relatively healthy girl with no regression but some disabilities.  Nothing is life threatening, nothing is impeding her ability to live a decent life.  She’s not teetering on the brink of a medical crisis, nor has she lost abilities she once had.

More importantly though – she’s one girl.  She’s just one child.  She’s not 1 in 88 or even 1 in 10,000.  She’s just one.

There’s no funding for medical research to find out what makes one child tick.

We’ve known this for years, ever since my husband asked our first neurologist if Maura had something.  I can still remember his response -an emphatic “Oh, she definitely has something…” followed by “…but you may never know what that something is.”.   He then explained how medical research isn’t interested in cases like Maura’s.

It’s not sexy.

It’s not funded.

It’s just not interesting.

Not to those in the medical profession at least.

I’ve had to be comfortable with the fact that Maura will most likely never receive a diagnosis.  I had to come to terms with that years ago, along with so many other things about Maura.  For all her cognitive disabilities, she’s too healthy, too happy, too social, and therefore, we fall through all the cracks, from medical ones to caregiving ones.

I know we’re not alone in this – but it creates a bubble around us, that makes us feel alone.  There is no national group lobbying for better health care for children like Maura, for insurance coverage and therapies.  There is no local group I can call for support and a list of doctors that treat her condition.  No web site run by parents to give me a clue as to what Maura may go through medically come puberty and adulthood.

And that’s just how it is.

There’s a certain degree of acceptance to it all.  Because you have to accept this or go mad. You accept that you’ll never know, that even if  you did come up with something, it’s probably so rare that you still have no answers.

But every so often, I’m reminded that I do want that interested doctor for Maura.  The one who’ll try to figure out that mystery instead of just treating the symptoms.  I’m afraid, as she gets older, those doctors are going to be almost as rare as a diagnosis for her.

 

Maura, waiting for the school bus 2012

 

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