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Babyface

5 Dec

The other day, Maura and I went out. Originally, the plan was to just hit the drive-thru Starbuck’s (of which there are 327 in a five mile radius of my house, because Seattle.) But then she spotted “the mall” – aka our local shopping center.

I thought “Well, maybe I can herd the girl to Hallmark’s, where she can pick out something Christmasy.” You know, because the girl loves all things Christmas.

What I love is I think I have control of these situations.

We got three whole minutes into the store before she was like “I’m out.”

We walked through the shopping center. She ooo’ed at the decorations (which were quite nice) and I dissuaded her from a trip to Old Navy (I have enough laundry). We wandered past the food court and to what Maura refers to as the book store.

It’s actually a comic book store. But it sells My Little Pony and Powerpuff Girls graphic novels. Hence, it’s a bookstore.

I love that there are graphic novels like these. Maura doesn’t quite read – not in a phonetic way. She’s learned up to 60 sight words, and can recognize things, but traditional reading is not something she’s getting yet. Graphic novels though tell the story through pictures, and she understands that. So yes, I’m happily plopping down a $20 bill so she can read the way she can read, and enjoy books.

Because she is my kid. She enjoys a good book.

We paid for the book of her choice – a classic Powerpuff Girls version – and headed back to the car with bribes of Starbuck’s. Once in the car, Maura was suddenly bent over the book, nose almost to page, studying it intensely.

 

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Suddenly, I had this moment to study her. My girl who, in her leggings and furry/suede boots and pink coat, was looking quite teenagerish before we left the house. But now, once again, I noted the softness to her face.

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It’s part of whatever it is she has, her Sherlock Syndrome. Her face is softer. It’s probably more of the low muscle tone that she has. Or it could be just regular genetics – when I was 13, people thought I was maybe 10, tops. When I was 18, people thought I was 13.  Maybe it’s a combination of low muscle tone and the family blessing of youthful looks. But she’s still such a kid. The baby of the family who has a babyface.

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Maybe it’s also partially my own filtering of things – in so many ways, Maura is still quite “young”. Other 13 year old girls are trying make up and considering dating and wanting to watch “Supernatural” or “The Walking Dead” or whatever parents have been deeming them too young to view but now they think they’re old enough. Maura isn’t like that. She’s still loving the same cartoon she watched four, five years ago, or more. Heaven forbid she finds The Wonder Pets on Amazon. Those little rodents still make her giggle.

Her progress is slow. Sloth-like at times. And other times, she will surprise you with her little newfound teen will and angst. She has discovered Supergirl, despite my trying to lure her to the Wonder Woman side of things. She likes Coldplay despite her aunt trying to influence her to the techno side of things. She has definite taste in clothes – I don’t even fight her anymore on styles, just sizes.

But then, there’s that moment, sitting in the car, her nose pressed into a Powerpuff Girls book and I am reminded yet again how she will live with us forever. Not in a bad way, or a burden-like way. Just in a “This is how things are” way. Because honestly? She and I get along so well, like things like going to bookstores and coffee shops and being sloths on the sofa together while eating pizza – what’s to complain about?

It’s just that sometimes, I look at her face and the softness to it, and am once again reminded that my baby is always going to be my baby in many ways.

 

 

 

In case I’m not clear, our life is a good one

9 Aug

I turned on the Olympics, the sound of the announcers voices luring Maura to the room where I was at.

“Swimming pool!” she stated.

“Yep. They’re swimming.”

Maura plops down on the couch next to me. She spots that I’m knitting. She gets up and goes over to where I keep the acrylic yarns, picks out one, goes over to my container of needles, picks out a set, and sits back down next to me.

“Are you going to knit something too?” I ask.

“Yes!” she states, then looks at me, holding out the yarn and needles. “Help Mom?”

Maura can’t knit, but I cast on several stitches anyway. “Here you go.” I said, handing the needles and yarn back to her. She eyes the row of stitches.

“Off.”

“Okay, then just pull them off.” I said.

Maura does. “I did it!” she announces, delighted. Then she pokes both needles into the ball of yarn, and starts knitting her own way.

This is our life together. Maura eyes everything I do, then tries to see if she can do it too. If I don’t want her getting into something of mine, I have to be more creative in tucking my stuff away, but I also make sure that there’s something similar for her to try. Because she wants to try everything. She’s like her sister and father in that aspect. It’s one of her strengths, and it’s something that I find scary as a parent. But I find it scary in her sister too. My girls keep me on my toes.

At this stage, I’ve come to embrace the fact that my life is nothing like I thought it might be when I was a single young woman in college. I thought I’d eventually move back to my hometown of Chicago. Instead, I’ve lived everywhere else possible. I wasn’t sure I’d ever meet a guy, only to end up one of the first of my friends to get married and have kids. I knew I’d have kids, but it was never on my radar that I’d end up a parent of a child with any sort of disabilities. Speech impediments? Yes. Those are a family trait. Quirkiness? Well, you wouldn’t be one of us without some quirks. Epilepsy? Never on my radar. Cognitive disability? Even less on my radar.

No, life didn’t turn out quite like I thought it would. It turned out way more interesting.

I never thought I’d have a child who would depend on me so much. My oldest, he was the most independent baby ever. At age eight, he announced “I can take care of myself Mom.” His next two siblings were also amazingly independent creatures, hitting milestones early, each one working hard to keep up with the older one. Then Maura came along. At first, I joked that with three older siblings, she had to be different to stand out.

Thirteen years later, she’s still standing out in her own way – like her siblings. And like her siblings, I have the same basic dream for her that I do for them – that she, and her siblings, are happy in life, and self-sufficient, and reach their full potential.

We joke that she’s our “forever girl” as she will need us forever. But I try to make sure people understand, we’re okay with that. It’s not the life we dreamed of, no. But my husband dreams of having a private island. I dream of being an indie rock star (yes, still). Those lives haven’t happened yet either. But I dreamed of having fun colored hair, and I got that. Josh and I dream of getting an RV and road tripping – we’ve just adjusted that dream to fit three in the RV, not two.

Has it always been easy? Nope. But parenting in general isn’t easy. Life isn’t easy. I never expected easy, even if every so often, I crave boring. I said this once to my therapist, who laughed and said “You’d be bored with normal.”

It’s true. I find normal…abnormal. I’ve never really had it.

Yes, life with Maura is more hands-on, requires more from me. I won’t deny it. But I read articles like this one, where the journalist goes out of their way to describe a life such as are full of burdens, where the mother has no care-free times, where life is a bit grey and sad.

That’s not our life.

Yet in reading the article, I see similarities. Yes, Maura will need us forever, at least, that’s the trajectory right now. Her siblings are aware that someday, they will have to take over for us, which is why for now, I try to let them just be normal siblings with her. Right now, we are pretty certain Maura will never drive a car. But she still has a love of cars that is seen throughout my side of the family. She isn’t the most communicative of people, not verbally, but still still can get her point across, make her opinions known. Yes, there are many similarities in our stories, but the attitudes are different.

I don’t look at my daughter Maura and see lost opportunities, a lost life, thwarted potential, a burden. I see this bright, amazing, individual who still likes to hug her mother, who steals my shoes, who is clever in so many ways. She’s also maddening and frustrating and stubborn – because she’s a teenager, and teens are supposed to push our buttons, it’s how they mature. She is a multi-dimensional person, just like the rest of us.

A blogging friend of mine visited us last weekend, and one of the questions he asked was “What have you learned from Maura?”

It took a moment, as my mom brain flicked through mental files of the past twenty years. I’ve learned so much from all my kids. But with Maura, what came to mind was enjoying life. She enjoys life so much. I tend to let doubt and worry hold me back, and she’s there, diving into life, laughing all the way. A lesson most of us could use.

Life isn’t easy – I never expected that. But our life is a good one.

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Today in life…

5 Jul

Extended School Year (ESY) started up again. I’m so happy Maura qualifies for it because all I’ve heard since school has let out from her is “Class? I like class. Class?”

The girl wanted to go to class.

Today, she got to go.

However, she noticed the bus pulled up from a different direction. And she got all “Nope. Not my bus, keep moving, you’re coming from the wrong direction. My bus always heads south, not north.”

Or, at least, that’s how I interpreted her “No…bus…” and pointing north.

(I think it’s north. I’m not really sure. We’ll pretend it is north.)

I explained that she rides a different bus for summer. And she understood. I love it when we understand each other. I understood the question, she understood the answer. It shows that all our hard work pays off. I say “our hard work” because when you have a child with a communication disorder, as a parent, it’s easy to fall into the rut of silence. I can easily anticipate Maura’s needs most of the time. She gets really comfortable in that rut as well. Basically, we both get a little lazy. So lately, I’ve been working on prompting her to explain herself more, be more vocal, show me, more interpretive dance moves – anything but her stare of “Can you read my mind?” that she’ll do. I still don’t expect Shakespeare from her. I would be totally cool with scripting. I expect her to quote Doctor Who to me.

Anyhoo…

She had a great first day of ESY and came off the bus ready for lunch, because it was lunchtime, and learning makes my kids hungry. So does breathing and being awake. I made her a sandwich and got her some applesauce. She was happy. I went on the computer. She foraged for something more and came to me with one of those ice pops, a blue one, in need of cutting open.

“LOOK!” she said, showing it to me. “STAR!” she stated, pointing to the word “STAR” written on the ice pop packaging, as I bought the Star Wars themed ones.

“VERY GOOD!” I said. And yes, we communicated in all caps because my daughter pointed out a word to read to me. Because she’s learning to read. BECAUSE SHE COULD READ THAT WORD AND IT’S FRICKEN AWESOME AND EXCITING!

Really, we’re having a terrific day today. And that’s not just all the caffeine in me talking. Though that was nice too!

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