It’s been one of those weeks

9 Feb

Okay, so for us, it was still in the realm of “normal”.

First, Maura cut her thumb on her sister’s razor.  Because she was trying to use the razor case as a flip phone.  Of course.  The good news was, it didn’t need stitches.  And after a couple of failed attempts of bandaging it, Maura finally left the bandage on long enough to let the wound clot up (not before she bled all over the bathroom rug.)  Of course, this was the night I had places to be, so I spent some time after it all apologizing for being late here and there because I had to re-bandage the bleeding thumb and telling her brother what to do if the bandage came off again.

Of course, in the midst of this, I had this brilliant idea of a home healthcare service, where a trained medical professional comes to your house to stitch up minor wounds of the children, so you don’t have to drag them to the flu-ridden ER for a couple of stitches.  This could also have an extra service of determining whether or not your child who’s knocked their little noggin against something has a concussion or not.  I need this to happen please.

Then Friday morning, at five a.m. I woke up out of a dead sleep to the sound of vomiting.  I knew it was Maura, and got up to find her sitting on the carpeted floor, looking miserable as she vomited again.  All over the carpet.  Because this house is chock full of cream carpeting.  Luckily, I just bought a Bissell SpotPro Cleaner so I cleaned the carpet as Josh cleaned the girl up.  He took first shift, God bless the man, because she threw up again.

Yeah, I’m not good with vomit.  Not at all.  So Josh is the go-to guy when this happens, and I love him all the more for it.

Needless to say, Friday was canceled as we wandered about like zombies watching Disney movies with Maura.  I had plans with friends, but had to cancel those.

*sigh*

And then as quickly as it hit, Maura was better.  By Sunday, she was back to destroying one room as I cleaned the other, and playing with her dolls while fighting with her sister over the Xbox.  But then, as I sat for a moment, I heard the distinct sounds of the lid of a bathroom container clinking back on.  There’s only two things that are in such containers in the bathroom, and one of them is Q-tips.

Sure enough, I caught Maura with a handful of Q-tips.  Which lead to the question “Did you put something in your ear?”

Oh yeah, both ears.

Argh.

I couldn’t get the white stuff, which turned out to be styrofoam pieces (which where she got those from, I have no idea), out with regular eyebrow tweezers.  But our long narrow medical tweezers (a gift from a doctor after he stitched up one of the boys, lol) were MIA.

First, I called Josh.  “Do you know where the long narrow tweezers are?”

“No…do I need to pick some up on my way home?”

“Maybe.”

Then I called a friend, who brought over two different kinds, and some knitting because hey, while here…

Meanwhile, Josh came home and asked “So, ears or nose?”  Because we’ve played this game before.  I had gotten most of the styrofoam out of one ear, he got it all out of the other, then we had to wait for Maura to chill to get the little tiny chunk of styrofoam still stuck to some ear wax out.  Go figure, the thing that got it out was a Q-tip.  Let me tell you, that moment was nerve-wracking because I was either going to nudge it out, or nudge it further in. I won that round.

Needless to say, we happily sent Maura off to school this morning.  Just so we can take a few moments to relax before it all starts up again.

 

Moments…

4 Feb

It was dark, still only four in the morning, but I woke from the sound sleep I was in as soon as the bedroom door opened.

“Hey Maura, come on in.”

She crawled up the middle of the bed, curling up against me as Josh got her a pillow of her own. Her toes rubbed up and down my legs, as she’s always done. For the next couple of hours, we both tossed and turned, but then as everyone else in the house started to rise, she once again curled against me, her head on my shoulder, my arms around her.

It’s hard to imagine her anything else but a child in those moments.  The only difference between the Maura of that moment and the Maura of six years ago is how much more room she takes up in the bed.

Eleven years of this and I’m still not used to the fact that Maura is a person with disabilities.  I know it.  I see it.  I live it daily. Yet at the same time, it’s still a wonder to behold.  How did we get here?  When did she get so big?  Is this really happening?

There are times it is so real, her disabilities.   But other times, I look at her, and I can see the blurry edges of the girl she could have been.  The girl with the long legs and thick eyelashes and a hint of freckles, who knows who she is so well and is so confident about that.  She will pause and I can see the girl without the disabilities for one moment – and then that ghost is gone and Maura is back to being the Maura I know so well.

I no longer mourn the child I lost at fifteen months, when “developmental delays” came into our world. I don’t mourn the future that could have been, or have ever wished things different.  It’s just that every so often, my breath is taken away by this person I created, who can be such a child one moment, and so normal another.  For one moment, the outside world pauses, and I have that child who Maura truly is, a mish-mash of innocence and confidence, undefined by abilities or disabilities, who constantly astounds me with her own beautiful conundrums.

How much normal should you cling to?

3 Feb

A question came to me from a reader, Donna, via my Facebook page.  She is the mom of a child with disabilities plus another, and had a moment of clarity the other day –

…for 8 years now we’ve tried to live the conventional lifestyle…like, eating dinner together as a family, having a proper dinner, dressing appropriately for mass, etc. the lightbulb moment came today (after two really difficult days). Why are we doing this?

So, it got me thinking….why don’t we forget about our ways…our ways are ingrained in us, it wasn’t a conscious decision we made to have a family sit down dinner, it’s just how it is, if you understand me. Why not drastically change things in our lives to better suit the needs of our children?

See, our current situation results in a lot of heartache for everyone…we need a change but are afraid to do so. If we no longer have a sit down family meal…how will this effect our son? Our daughter? Will we succumb to their every whim because of this? Are we giving in too much, just to keep peace? And, what else can we change that isn’t even on our radar that might make life easier for all of us? Basically, we are at our ropes end and need change and advice. Can you help? Either by your own advice or by posing this question to your audience, please?

I thought this was a fantastic question – how does a family manage?  Where do you draw lines and fight the fights?  What is important and what can you let fall to the wayside?

Our life with Maura is a series of compromises and picking our battles.  It’s sort of our norm at this point.  We power through what we can, know when to cut and run, and put a foot down when needed.

For us, we decide what’s worth compromising a bit.  Like with church – Maura isn’t always the model church goer.  We play it by ear each Sunday.  Some days, she’s fine.  Other days, she’s a bear.  We’ve realized that the 5 pm mass is hard for her – she’s ready to eat and is a bit cranky.  But the 5 pm mass is the teen mass, and we have the teen who is involved with all the youth group stuff.  So, we’d go to that mass, knowing that it could mean a parent is sitting in the foyer with Maura.  Let me tell you, I really prefer sitting in the church.  But if sitting on the floor of the foyer means Maura’s calm and I get to hear what is usually a very good homily by our priest, versus sitting in the church and wrangling Maura the entire time, or having her shriek during inopportune moments, so be it.  I will happily sit on the floor in the foyer.  Our pastor greets us with the same smile no matter where we’re sitting.

And dressing appropriately for mass – well, at this point, if we’re clean and neat, I call it a win.  Since I’ve had to wrangle Maura for all these years, I dress appropriately for wrangling Maura.  I did wear a dress on Christmas, and she tried flipping up my skirt!  Eep!  I do have a couple pairs of nice dark wash jeans that are comfy that when paired up with a sweater and flats can look good enough for church.  But I also know that at any moment, Maura may try to protest by laying on the ground and I have to get down there to talk her back up.  You can’t do that in nylons and silk.  Luckily, Maura loves dresses, and we have leggings to go with all of them, so she can’t flash anyone.  That said, if she dressed herself in a mismatched outfit with polka dotted knee socks and a cape and she did it HERSELF – that’s what she’d be wearing out.

Where I do draw the line with clothing is if it’s dirty or she’s not covered up enough. For the former I explain it’s dirty, show the spots, promise to wash it and that as soon as it’s clean she can wear it again.  It’s still a concept we’re trying to get, as well as “too small”, but we are getting there.  For the latter, well, sorry kid, but pants are socially acceptable.  (However, she is usually covered enough, thank goodness!)

Really, what it comes down to is how you answer certain questions –

“Is this something she *has* to learn?” – like wearing clothes – yes, she *has* to learn that.

“Is this something we can let her have her way with?” – like picking out a Frozen backpack even though she’s 11 and a little “old” for it? – totally!  She wants it, she loves it, she doesn’t care what others think.

“Is this something that’s really worth the battle?”  – like where we sit in church? – no.  As long as we can hear Mass, we can participate from where we’re at, whether it’s in a pew or in the foyer.

These days, much of what I do is finding a balance within the family, so that it’s not always about Maura to the point that the teens resent her.  We can sit down together for family meals, but Maura eats obnoxiously, it drives one of her siblings absolutely over the edge, and then everyone else starts hyper-focusing on her obnoxious eating as well.  When we do sit together, I will sit next to Maura and drive the conversation to make sure people don’t start focusing on her.  Other days, we’ll all just grab food and scatter, or only some of us sit together.  The main thing about family meals is the conversation that happens when you eat together, so I do try to check in with teens at other times, ask how their day was, what’s new, how’s life, etc?  Because that’s the important part of family dinner, the talking.  If the whole meal is everyone getting annoyed at the sounds of chewing, then you’re not getting that chat time.  Meanwhile, I do sit with Maura and try to teach her how to eat less obnoxiously.

Does she *have* to learn how to eat less obnoxiously?  No.  But it would make my life better so we work on it.

Are family dinners absolutely necessary even if they’re 37 minutes of angst?  Well, if you’re not getting the connecting with loved ones time, then find a new way to have dinner and maybe start a new thing, like “Mom and Son hot chocolate time”.

Should Maura be allowed to free-for-all in her siblings room, destroying their stuff?  No.  That’s where I draw the line and remind her that it’s their room, she’s not to play in there.  I’m not always successful, but I am respectful of their need to have their own Maura-free space.  And it’s a teaching moment for Maura, that not everything in life is hers for the taking, and a valuable life skill she can learn at home.   She is able to learn that, so I make sure she does.

Meanwhile, I have also realized that Maura is no longer a little girl.  She’s a tween.  She’s a tween girl who’s hurtling towards adulthood faster than I’m ready for.  She’s almost my height, and will end up taller than me.  So much of what I do now is groundwork for ten years from now. She can’t just throw a screaming fit every time she doesn’t get her way.  She can’t wander through the house in a free-for-all.  She can learn how to do things on her own.  She can’t take over everything. She can learn to share and take turns.  She can’t learn these things overnight.  I have to take the time each day to go through all this because it will take her months to grasp onto concepts.

But this doesn’t mean I force her to be more mature than she is.  Maura loves dolls, and will keep loving dolls long past the age it’s socially acceptable.  As me how much I care about that?  Oh, I don’t.  In fact, recently, I’ve been opting for bigger dolls, because she’s bigger herself.  Those dolls will grow with her.  I don’t expect her to want to watch “Pretty Little Liars” or whatever the normal teen crowd is watching – I’ll let her happily stick with My Little Pony and other cartoons.  (My teen girl is watching Korean teen soap operas, and Maura has no interest in those either.)

The fact is, Maura is mentally younger, and will always be so.  But she hasn’t stalled out at a certain age.  It’s a constant state of flux, where one day she’s finally able to grasp a new idea, but it means a lot of working towards that new idea.  And since teaching her certain things is so much work, we have to allow her a free pass once in a while.  Realize her limitations, that when we go out with her, we’re on a clock and may have to leave early for her sake.  And there are times when you have to embrace the fact that this is just how life is.  Maura can pour herself a bowl of cereal, but sometimes, the cereal ends up on the ground.  It’s not on purpose, her aim isn’t always great, and her reaction time is slow.  There is no point getting mad.  Instead, we just go “Ooops, okay, let’s clean it up” and have her help sweep it up.   It’s more worth it to us for her to learn independence than to have a neat house.

But most importantly, the one thing I always keep in mind, is that despite all her differences, Maura is still her own person.  She is an individual, with her own thoughts, feelings, and emotions.  She is stubborn like the rest of us, knows what she wants, and has her own sense of style.  I haven’t forced my other kids to conform to a cookie cutter, why should I do that to her?  I respect that she has her own fashion sense, that she loves wearing school uniform outfits, and prefers certain colors.  She has a personality, and it is fabulous and should be allowed to shine.

And sometimes, yes, we totally cave for the sake of peace.  And you know what?  That’s okay too.  Because our life isn’t normal.  It has never been normal, and it definitely will never be normal.  Adding Maura to the mix just made it all even less normal than it was before.  And there are days where we’re all a little twitchy or cranky or overtired, and it’s just easier to say “Yes, let’s watch cartoons and eat popcorn” and let the girl have her “Best Day Ever!” than for all of us to just end up in tears.  I’m not letting her juggle knives, and I draw the line at setting the house on fire.  We still have some standards.

Our standards are just different and ever-fluctuating.

 

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So readers, how do you manage daily life with special needs?  Where do you compromise, where do you fling normal to the side, and when do you try to conform to societal standards?

 

 

 

 

 

 

 

 

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