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I wasn’t a “special mom”

21 Nov

People love to say “God gives special children to special people”.  It’s almost a requirement that those words fall out of your mouth as soon as someone says “My child has special needs.”

“OH!  You must be special too!”

I wasn’t special.

No, really, I wasn’t a special mom when I had Maura.  There wasn’t anything about me that ever even imagined life with a special needs child.  I never had any good intentions of having kids, then adopting a child with a syndrome or a need.  I never had any leanings towards the medical profession.  I entertained the idea of being a teacher for one semester – until I said to myself “OMG, I don’t want to teach! What am I thinking?”

When Maura was born, I had three other children.  Collin had just turned 7, Sean turned 5 two weeks before Maura’s birth, and Miriam was in a very precocious stage of 2 1/2.  I was a good mom – I think.  I was definitely creative.  But I was also overwhelmed and busy and disorganized and doing my best not to drown and take everyone with me.  Or as I called it back then, normal life.  Normal juggling of sippy cups and soccer practices and kindergarten snacks and laundry.

I had no clue I was supposed to be a special parent.  I was too busy trying to be a decent parent for that thought to enter my head.

And for the first fifteen months of Maura’s life, I was still that normal parent trying not to give her kids fodder for a future therapist, succeeding one day, failing the next, doing my best not to leave the house with baby poop on me.  All while enjoying those four little crazy people who I brought into the world.

I wasn’t a special person, not to the rest of the world.  Maybe to the kids and my husband, but to the world, I was just another mom.

Even after we started down the road to discovering there was more to Maura, I didn’t get the title of “Special Mom” – because Maura didn’t get the title of “Special Needs” for so long.  I wasn’t out being the warrior mom, kicking in doors and taking no prisoners until Maura got all she deserved in therapy.  No, I nodded and smiled my way through all the meetings through the sucky early Monday morning therapy spot that I knew wasn’t a good fit for my non-morning child, because that’s the time they could give us.  I didn’t fight, I didn’t argue, I didn’t question.  I didn’t know better – nor did anyone else.  When you’re working under the assumption of “She might catch up” coupled with no label, you don’t get a lot of convincing arguments as to why your child needs more.

Time went on, and things became clearer, and I learned how to navigate the world of developmental delays.  But I still didn’t feel “special” – Maura still wasn’t called “special”.  No one wanted to admit it to us until our neurologist answered our “Do you think she has something?” question with a blunt “Oh yes, she definitely has something!”

Finally, when Maura was three, I was given the permission to consider our situation “special”.

Even then, I had outsiders telling us that our situation wasn’t as special as their own, or ones they knew about.

I wonder what they think now?

“God doesn’t give you  more than you can handle!”

Well, it sure felt like it.  I spent all those critical early years of Maura’s life flailing about, being told I was over-reacting, being told there were no answers.  It was hard to listen to the voices telling me that I was doing well because there were so many negative voices around me.  When Maura had her first seizure, people started to take notice of our situation.  The naysayers stopped trying to deny the fact that our situation was, indeed, special.  I was finally able to say “My daughter has special needs.” and not feel like a fraud.  Somewhere between the time Maura was three, and when she was six, I went from trying to keep my head above water to learning how to kick ass and take names while doing it.

I didn’t start off as a special mom.  I had to earn that cape.

I still don’t think I’m that special of a mom sometimes.  I’m still disorganized and overwhelmed at times.  I will look back on Maura’s early years and with that bitch Hindsight, see all that I could have done better. It is still a bit jarring at times when I actually stop and think “I have a child with special needs.” It’s always a surprise when I try to figure out just how I ended up here, in this life, in this situation.

No, God didn’t give Maura to a special mom.  But I am glad God gave me Maura.  Maura carved me into that special mom.  The process hasn’t always been smooth, and the process has been painful at times. But these days, I can say that yes, I am a special mom, and I earned that title.  I earn that title every day.

 

she can't really read yet...but she loves books just the same.

 

 

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Maura’s ruining my resolve

20 Nov

I like Christmas.  I like it lots.  I have happy childhood memories of Christmas, of my grandfather convincing us he had Santa’s phone number and that he appeared in “A Visit From St. Nicholas” with Santa (“You know where they say “Then he turned with a jerk?  I’m the jerk!”).  But I am also a stickler about when Christmas really starts to happen here.

Oh sure, I will buy certain things before It’s Time, because at the rate the stores push holiday items, you’re forced to buy now or miss out.  Like Christmas lights.  I bought them all early last year, as we needed lights that didn’t have funky Irish plugs.  I felt a bit dumb buying them all early.  But as soon as Thanksgiving hit, it was a free-for-all death match in the light section.  This year, I bought wrapping paper already, in this pipe dream that I’ll actually start wrapping gifts before December 23rd.

But for the most part, I let Thanksgiving come first.  I have my little turkeys out, I still have my pumpkins out front and about the house.  I like Thanksgiving.  I want it to be its own holiday. I don’t do Black Friday.  I don’t listen to Christmas music early, or binge-watch Hallmark Channel for sappy holiday shows.  I let the holidays come in order – after Thanksgiving, I’ll start the Christmas decoration (I used to wait until it was officially December…but if I actually want to decorate and enjoy it, I have to start earlier, or else I’ll barely get the tree up.)

All that said…

It turns out Maura is mad for Christmas.

She didn’t get things like birthdays and holidays for so long, but in the past few years, she understands it more and more.  She adores Halloween – all the spooky and dress up and shows.  “The Nightmare Before Christmas” – aka “Spooky” – became a daily viewing in September.  Last year she watched Halloween cartoons well into the Christmas season.

This year?  She’s embraced the American attitude of “Christmas can’t start too soon”.  We’re already tired of Mickey’s Once Upon a Christmas.  And then, during a trip to Target yesterday, she gasped when she saw the Christmas section.  I’m pretty sure if she could have hauled a ten foot tree into the cart on her own, she would have.  She also wanted the pack of 500 shiny red ornaments and all the lights possible.

Did I tell her it was too soon?

Did I try to explain how Thanksgiving comes first?

Did I tell her she could just look, but we weren’t buying anything?

Do I look like that big of a meanie?

Nope.

I went into compromise mode.  We don’t need 500 shiny red glass ornaments.  I did point out the little package of tiny plastic shiny ornaments, which she found cool enough, and will fit on her little pink foil tree.  We also picked out a Frozen ornament, and some twinkle lights (because in my world, twinkle lights know no season).  I did talk her out of yet another little foil tree (she was all “Okay, so I have the pink one…fine…but there’s also a blue one…and a gold one…”  No kid.  You only get one little tree for your room.)

I totally caved at the 5-foot foil trees.  She thought they were awesome.  I can admit, when I saw them last year, I tried to figure out where we could put one, because I thought they were awesome too.  A green one followed us home.  Maura proudly hauled that box into the house, and insisted we set it up immediately.  Then spent the rest of the day carting it about the house to set up in different locations as she took the roll of wrapping paper from last Christmas and pretended to wrap things.  And then, she found her sister’s Christmas Sweater t-shirt from last year and put that on.

And so it begins, whether I like it or not.  Because sometimes, when something makes your child that happy, you cave a little.

When the teens arrived home, one looked at the Christmas stuff and asked “What gives?”

I said “Maura.”

“Oh.”

Yes, sometimes, when there’s a question, the only answer needed is “Maura.”  All is understood.

 

The realities

13 Nov

Yesterday, I was reading about when was it time to talk about caregiver burnout over at Lexistential.

Yesterday, I also sent Maura off to school with a “good luck, she’s been mood swinging all four-day weekend”, and got a  “Wow, if today’s any indication of how you’re weekend went, I am so sorry!  It must be hormones!”  note from Maura’s teacher.  I did manage to get Maura settled down with her brothers so that the teen girl and I could slip out and go to a “meet the author” thing.  We had a blast, singing in the car, taking selfies while waiting to meet the writer, making a “late” night food run on our way home.

But then we got home.  And I found Maura, at 10 pm, still awake in her room with her iPad, looking a bit cross-eyed because omgshecouldn’tputdownthecrackpad.  And there was a smell of poo lingering faintly in the air.  And mascara smudged across her face because she decided to mimic her sister, putting on make up and trying on clothes.

There was a trial of Hurricane Maura through the house.  I went to go yell at the teen boys about watching their sister better, and they just looked at me.  And I looked at them.  And I walked away.

Because I realized – sometimes, it’s all just too much.

So I went to bed, knowing that thanks to Maura being awake at 10 pm, at 7 am, she’d be difficult.  That her whole day could be thrown off.  But in order for me to sneak out with one of the teens, it required the others to pick up the slack. And they were doing their best probably, but then poo got involved and let’s face it, at that point, even the parental units start looking for the quickest escape route.

And somehow, this has become the norm – if I’m not there to hover over Maura 24/7, then I know that I may come home to something that needs taking care of – crayon on the walls, poo on the bathroom floor, a girl who really can’t handle mascara.  And I will take every fall possible if it helps me make sure my older three have a few moments of normal life fun.

This is my life.  These are my realities.  And this?  This was a good day.  Just a couple moody meltdowns that were easily fixed, but otherwise, it was a good day, poo and all.

The thing is, most of us in similar boats don’t talk about it.  We don’t talk enough about how much of a caregiver we are.  We don’t speak of how much we sacrifice personally because we’re taking care of this extra-special person, while trying to juggle normal lives for the rest of our families.  And if we do bring up something like poo, we’re greeted with “OMG! TMI!”  If we mention we’re exhausted, we’re told “You need a break.”

Yes.  Yes we do need a break. But we need you to laugh at our poo stories as well.  Because poo is a reality, getting a break is a dream.  And if you don’t listen to the poo stories, you can’t really understand just why we need a break.  And honestly, sometimes we don’t need a break, we just need a friend to laugh at our poo stories.  Because if you make the “Ew! TMI!” face at us, then we realize that what we’re dealing with on a daily basis…is kind of gross.  And that’s disheartening.  It just adds another scoop of sadness onto our crap sundae.

And it’s all exhausting.  So by bedtime, I’m ready to just become a zombie.  If dishes don’t get done, so be it.  If there’s a pile of (clean) laundry on the couch, I don’t care.  It’s 9 pm, and I’ve clocked out for the evening.  Because I’ve spent half my day running around trying to do stuff while Maura’s at school, and the other half wrangling the girl herself.

Girl Wrangling includes things like arguing over computers, tablets, and tvs (she wants to use them all, all the time), having her help me clean the pencil scribbles off the wall, spending five minutes convincing her she must brush her teeth and cornering her in the bathroom until she finally, happily, brushes her teeth, sitting in the hall while waiting for her to use the toilet, cleaning poopy underwear, trying a new way of organizing her room so that this time, maybe, she won’t dump everything out, keeping her from killing herself accidentally because she thinks she can use the biggest knife in the kitchen to cut stuff or make her own toast, running as soon as I hear a strange noise because it could be something like her deciding to make popcorn on the stove, or she dropped a glass, realizing that it’s quiet…too quiet…not being able to fall asleep until I know she’s asleep, watching Mulan every damn day until even the teens are singing “I’ll Make a Man Out of You”, chewing obnoxiously, helping her bathe (which means I get a shower and my clothes washed at the same time!), dealing with a sudden-onset mood swing because her brother blinked incorrectly, did I mention poo?, having her follow me around the house as I look for her shoes instead of just staying where I asked her to stay, fighting with her about clothes (okay, that’s probably a normal thing), letting her “help” me or do it herself even though it means making the task 29438 times longer, hiding certain things (because no one should eat 8 granola bars in a row), and whatever else she throws my way.

Luckily, she has such a good attitude most times that when I do clean her room, it’s met with “WOW!”, when we do a task together, there’s high fives, when we do agree on clothing, there’s girlish preening, and just because she loves us, there’s lots of hugs and kisses.

But it is still exhausting.  And it’s all the time.  It’s our reality, and while we don’t complain about it much, it is there, eeking away at us.  We’ll have our moments, and we’ve earned them.  We’ve had our days, and we’ve earned those as well.  And we’ll be doing this for the rest of our lives, because the other options are too hard to think of.

We caregiving parents put up with all of the trials and the traumas because that’s the only viable option given to us.  Anything else will just break our hearts.  Because as much as that special person drives us up walls and across ceilings, we love them, and we want what’s best for them.  And we know that others may not treat them well or lovingly.   So we keep caring, and giving, and parenting.

The least everyone else could do is listen to our stories, TMI or not.  Because sometimes, telling that story is the closest thing to a break we’ll be getting all week.

 

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