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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?


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.”


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


The Bus Stop Blues

5 Nov

Maura can be…balky…in the morning.  Like, stubborn immovable cow balky.  It’s not her fault – she gets her non-morning person from me and the stubbornness from both sides of the family.

This morning was no different.  After pulling her from bed and getting her dressed, she wandered the house in a daze looking for just the right things to bring to school.  Which were two Frozen books and one book on American Sign Language.

(side note – she showed me the sign for “bird” yesterday.)

I get her all ready and tell her to put on her shoes.


“Honey, you have to wear these shoes.  They’re your only shoes.” (That’s a lie.  She has a pair of pink Crocs, but she’s been forbidden to wear them to school after she spent a day kicking them off and walking barefoot.)


“Fine.  I’ll put your shoes on for you.”


“Hey, what about, after school, we go buy new shoes?”


Yes, I salvaged the mood with some new shoe bribery (though not really a bribe, she’s overdue for a new pair).  We put her books in her backpack, she got her jacket on, I shooed her out the door.  Once outside, she points to the car.

“No hon, you’re taking the bus.”


Seriously, she LOVES the bus.  She adores the bus.  Buses make her as giddy as…well…a school girl.  I wonder if she thinks we’re getting shoes now, so I do the “You’ll take the bus to school, and you’ll take the bus home.  After school, we’ll take the car and go get new shoes.”


Bullet dodged.

Until the bus arrived.

“NOOOO!!!”  She goes to dart away.  I’m already onto her and latch onto her arm and do the “You need to ride the bus to school, and home.”

She becomes an immovable force, digging her heels into the ground.  However, thanks to working out with a personal trainer, I’m all set to strong-arm her towards the bus.  We get to the door of the bus, she grabs onto the hand rails and uses that to push back against me as she digs her heels into the ground.

Now, people may think I’m joking when I say at the gym “I need to be able to lift 100 pounds, because that’s how much Maura weighs.”  But it’s not a joke.  I wrapped my arms around her middle and hefted her onto the first step.  She balked, tried to resist, but then finished going up the steps with only minor guidance from me (aka, I didn’t have to propel her forward as she dug her heels in more.)

I’m sure the car that stopped for the bus was wondering what the heck was going on.  I’m also sure we look a bit ridiculous, the tall girl leaning back into the short mom who’s trying to heft her forward, who then says “Good girl!” when the tall girl finally moves forward.  Yes, I’m praising her for not being as much of a stubborn little non-morning person.  Yes, I get her into the seat with a smile and buckle her in while telling her not to pound on the window and that after school we’ll get new shoes. Yes, I get off the bus smiling for the world, waving to the girl who has been such a pain.  It’s what I do.  It’s what has to be done.  Her getting on the bus in a mood doesn’t necessarily mean the whole day is a bust.  It just means she’s not a morning person.  And my reward is a moment of quiet contemplation with my coffee, which I raise in a toast towards the direction of the school, wishing them all the luck in the world with my stubborn little chick.

It’s not like this every morning.  Some mornings, she’s golden, getting herself dressed and helping make her lunch, getting on the bus with a big smile. Some mornings, she’s a little disorientated, not fully awake, and easily steerable.  And some mornings…are like today.

It’s just life.  We embrace the good mornings, and shrug off the bad ones with a laugh at the ridiculous picture we paint to the world.  And it’s only for a few more years.  Then, once school is over, that girl can sleep in every morning possible.

Not a morning person

Not a morning person


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