And on Wednesday, I stopped

9 May

Life has been…interesting…the past few…I don’t even know how long.  We’re renting a house that was obviously built on cursed land and is in need of an old priest and a young priest (we’re way past that frou-frou smudging technique), Maura’s been obnoxiously, everyone’s been busy and stressed, and then the property manager called to state that in light of all the expenses of the house, they decided to sell once our lease is up in June, so we need to find a new place to live in a highly competitive rental market.

On Monday, I wrestled Maura onto the bus, as she didn’t want to get on, and tried not to let her accidentally injure my already pulled muscles from the previous bus-wresting match.

On Tuesday, I took her with me to the grocery store.  Only for her to have a complete meltdown because she didn’t want to go to the store for food, she wanted to go to Chipolte.  But we needed food for the house.  But she chose to scream instead as I wrapped an arm around her to keep her from running into the parking lot and tried to bribe her with ice cream in the store.  It didn’t work.  We went home without groceries, and I ordered pizza.

Wednesday morning, I spent a good ten minutes dealing with a very angry stubborn Maura who was upset by the new rule of “no dolls can go to school”.  Once again, I had to maneuver her physically – but from a seated protesting position on the floor, then out the door, then down the stairs, then down the sidewalk, driveway, etc.  She screamed.  She bit her hand.  She was generally awful.  I did manage to get her on the bus.

And then I went inside, and I just stopped.

I was done.  D.O.N.E. Didn’t matter what, I just couldn’t.  And because it was a Wednesday, which is early release day every Wednesday, I knew that at 12:10, Maura would be back and there may or may not be yet another battle of wills again.

And I couldn’t anymore.  The stress, anxiety, worrying, all of life, the muscles throbbing in my right shoulder from Maura continually pulling on them – it all welled up.

Done.  I laid in my bed and caught up on tv shows and did nothing.  I ignored calls from friends.  I hid out.  I couldn’t deal with one more thing all while knowing that in a few hours, I’d have to at least deal with Maura.

This is a reality of my world, the reality of a parent who’s also a lifetime caregiver.  You do so much every day, and then one day, you stop.  You’ve hit “empty” on the emotional tank and you crawl into bed after taking your anxiety pill and hide for a bit.

Ironically, when Maura did get home that day, she was in a happy mood, didn’t pester me for tv, just happily played with her dolls. I watched tv and listened to her happy doll chatter.  Then she came in, climbed into bed with me to play with her dolls, lining them all up against my legs.  A few moments later, I heard a little snore.

She had fallen asleep.

It’s been a long time since she’s napped without being ill.  Obviously the mood swings of the past several days had exhausted her too.

That Wednesday afternoon, we both stopped for a while.

And then later on that evening, I totally cracked on my husband, sobbed and whined and voiced all the anxiety that had been building up.  How I hated to have to move again, how I was too emotionally drained to do anything creative most days, how I couldn’t even cook dinner anymore.  I was sucking at everything.

He assured me I wasn’t, and then we made a new game plan for life – because he’s awesome and I’m a lucky gal to have someone who’ll put up with my anxieties and stress. Teens crept in the room to ask if things were okay.  I totally lied and said that they were, then felt sappy that I have such caring teens, and knowing that they weren’t dumb enough to believe my lie.  And then somewhere along the way, we started watching “Honest Trailers” and laughing over them and life started back up again.

Thursday I woke up feeling better, once again able to handle what life throws at me.

So of course, what life threw at me was a flooded downstairs bathroom.  Which we spent the day going “Gee, why did it flood?”.  The boys who predominantly use said downstairs bath, swore they didn’t do anything to cause the flood – one used it and it was dry.  The other went in later to use it and it was flooded.  I chalked it up to the wonky toilet that clogs, that it must have overflowed, and chucked sopping wet towels into the washer.

And then the downstairs shower drain bubbled up and spewed again.

Because the main drain is clogged.  So when we ran a shower upstairs, or the washer, or even flushed a toilet, the drain backed up and out of the shower downstairs.

Which is how we spent our Friday.  Waiting for plumbers, showing more plumbers into the house, hearing the plumber say “Oh my God!” as he fished a camera through the drain pipe, having the plumber show me where the other plumbers who put in the new water line (because that’s how we spent March, with the main water line feeding into the house bursting) – in putting in the new line, they oops, went through the sewer line, busting it, chucking clay piping into the sewer line, causing anything we flushed to get caught on the shards of sewer pipe, causing a clog. I would have rather them have found a skull clogging the drain to be honest.

Which is why at this point, we need an old priest and a young priest – because the levels of ridiculousness have become astounding in my life.

Luckily, when evil starts bubbling up from the shower drain, you suddenly look at moving as a great thing.

And I have realized that this post sums up why I’m taking anxiety meds.  Because wow.

If you’d like to help, please send boxes and sangria.

 

And then I failed at being a girl

2 May

I had someplace to go where I decided I needed to be somewhat respectable looking.  Not dressed up, but certainly not “I’ve been schlumping about the house, the water was turned off for 5 hours while the plumber fixed the line AGAIN, oh God, did I even brush my teeth today” state I’d been in.  It wasn’t worthy of a shower at 3:30 in the afternoon, but I thought there was some sprucing up I could do.

I glanced down at my chipped sparkly nail polish covered in craft paint and thought “Hmmm…that doesn’t scream “I’m reliable!”.” and decided to take it off.  Except, being a glitter formula, it wasn’t coming off very well.  I then remembered the gal at Ulta saying how this particular glitter blend was a bit like taking off gel manicures.  Soon, my cotton pad soaked with nail polish remover was caught on all the now jagged edges of glitter polish, and melding with it in a weird spider-webby appearance.

Awesome, I thought.  Then I thought about how back in 1989 my mom had that nail polish remover in a jar with the sponge, and you’d stick your fingers in there and twist and bam! Nail polish removed.

I didn’t have one of those.  But I did think to stick my nail in the polish remover cap full of remover.

It only worked slightly better.  Or not.

After enough time and a couple more soaks in the cap of polish remover, I finally got the silvery cottony gunk removed from my fingers, and was now behind schedule.  Fine then, make up.  Make up always makes you look more put together.

Unless you decide to use that new “tight lining” wand of stuff you got at your last visit to Ulta.

What is tight lining, you may ask?  It’s when you apply eyeliner to the underneath area of your upper eyelids.  Or, you know how back in 1989, to get that great black eye gunk look, you’d drag your lower eyelid down and run your Wet ‘n Wild eyeliner across the inside of the lid?  It’s that, but with the upper lid.  Some gal at Ulta did it to my eyes, and it does look good, but I blink SO much that I can’t do it to myself.  Probably because you shouldn’t be jabbing the inside of your eyelids with a pencil.  Anyway, I got this tight lining thing by someone, and it said it worked as a tight liner, primer, and mascara.

What it is is a tiny narrow mascara wand that you press against the lash line, to create the effect of tight lining.  Which would work better if the wand wasn’t so dang straight and your eyes curved in shape.  First try, nothing happened.  Second try, I got a lovely gob of black in the center of my eyelid.  Then I kind of began to get the hang of it and just as I almost had it, I missed and blinked and smeared the crap all over my eyelid.  I wiped, retried, and ended up having it not quite even and my middle eyelashes somewhat stuck together.

I grabbed the coordinating mascara and started to try to layer that on.  Only for it to go on a bit thick as well.  I tried to balance it out but instead made it all worse.  I now had that spider lash look, which doesn’t reek of the well-put together woman. I grabbed a spare mascara wand and tried combing it all out a bit so it wouldn’t be as clumpy.  Then I realized I still had a large black spot of tight liner in the center of one eye, so grabbed my black eyeliner pencil to try to balance it out. That didn’t work.  Instead, I managed to smear it in a different direction.

At this point I realized it wasn’t going to work, and the weight of the tight liner and mascara were beginning to cause my eyes to droop. It all had to come off.  I grabbed the heavy duty eye make-up remover and rubbed it on one eye…and then into it.  Which is not the best way to do it.  I tried wiping it off only to look like a goth girl who had been crying and might still be drunk.  I wiped more mascara off only for it to pool under and to the sides of my eyes. Of course, now I was blind in one eye, but I did discover that earlier in the day, when I had spilled glitter down my front, it had also stuck to my…décolletage.

And there I stood in my tiny bathroom, looking like a gothy unhappily drunk sparkly vampire wannabe with a squinty eye who smelled like nail polish remover.

Awesome.

I grabbed a less offensive make up remover, and managed to get the rest of the black shit and glitter off my face, and swiped on some of my standard mascara and lip gloss, and threw my hair into a pony tail.  I had given up on looking like a responsible adult and went for “dressed in something clean” and got to my thing on time instead.

I swear that usually, I’m not this big of a failure at being a girl.  But let me tell you, when I do fail, I go whole hog.  Hopefully someday, I’ll regain vision in that one eye.

 

 

 

 

The time I realized we didn’t get a Big Reveal Moment

1 May

So many special needs story start with “When we got the diagnosis…” or “On the day he was born, we knew he had…” or “The doctor looked at us with a sad expression and told us she had…”

I’ve read these stories for years now, and yet it just recently occurred to me that Maura’s lack of diagnosis has short-changed us in yet another department.  We never got our Big Reveal Moment, where the diagnosis was clear and astounding, where we could have that defined reason to mourn all we lost.  We never had that moment where we could call family and friends and say “Maura has THIS” and they could all rally around us, offer support, or choose to ditch us because it was all too much for them (hey, that happens too, it’s a reality.)

We never got our moment in the medical spotlight.

I know, it sounds silly, doesn’t it?  And it is.

But it’s not.

For a couple years, we floundered about with Maura.  We weren’t sure what she needed or what to ask for.  When I did say something, I was told either things would get better, that she would catch up, or that I may be overreacting (which was then followed by the prerequisite “Other people have it worse” statements – which are never cool by the way.)

In a way, I felt we were illegitimate in the special needs world, the bastard red-headed stepchild amongst the legitimate blonde heirs.  Luckily, I love red hair and have never wanted to be a blonde, so at least I was up for this role I was placed in.

Eventually everyone was on the same page – Maura was indeed disabled.  I remember when she was about four, finally using the phrase “special needs” – as in “She has some special needs”  – to explain her.  I used that particular phrase because people understood it without me having to explain further – because there was no further explanation.  It put us in a category that was recognized and fit us.

Then Maura was diagnosed with epilepsy, and any last naysayers were hushed.  We were dealing with something serious, something out of the ordinary.  We were indeed Special.

However, the time for the Big Reveal Moment was long past us.  Even the diagnosis of epilepsy was more of a secondary diagnosis, versus an all-encompassing one.  We were all used to Maura being different at that point.  She was wearing glasses and ankle braces and diapers at age four.  She wasn’t speaking really, or able to sit on a swing without accidentally falling off.  She was definitely different.

And yet, the diagnosis of epilepsy gave me a moment – maybe not a Big Reveal Moment, but a moment none-the-less.  I could read about it, tell people about it, have people know exactly the seriousness of this diagnosis.

But I didn’t mourn.  I was long past the time of mourning.  Instead, I was a bit giddy at the idea of Maura having something explainable, something that came with books and websites and a freaking awareness ribbon. Because it’s all about that awareness ribbon you know.

You don’t get a ribbon for “I don’t know what she has.”

And so the time passed.  We embraced the idea of having a generic disability.  I learned about the phrase “orphan disease” and a hundred different syndromes Maura didn’t have.  Eventually my world expanded, and I started reading other people’s stories.

“The day we got the diagnosis…”

I realized…

We never got that day.  We never got that one definitive moment in time where someone said “THIS is how your life is going to change.”  There was no crisis moment, no door closed so a window could open.

It just happened, like the grey hairs sneaking up on my head.  One day, I looked at us and realized we had become a special needs family.  That Maura was disabled.  That this was a lifetime commitment.  And somehow, I had come to terms with it all, little by little, as did everyone else around us.

Would it have been better if I had a Big Reveal Moment?  I don’t know, maybe?  Maybe not.  Other people would have gotten it sooner, and it might have saved me some judgmental pain, as no one would have told me I was overreacting.  Maybe I wouldn’t have gotten the “They have it worse” stories.  I could have definitely survived without all that. I might have been able to better advocate for Maura in the early years, by saying “She has THIS, and studies have shown she needs THIS!”  Hell, I may have gotten a meal train out of it for a week even, pasta dishes to heat up, maybe some ice cream for me to emotionally eat to cheer up the kids.

But then it wouldn’t be my life if things went like it did for other people.

You can still send ice cream though.  For the kids, of course.

btdt got the t-shirt

btdt got the t-shirt

 

 

 

 

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