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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.


“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.







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.


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!

And now, a guest post from my sister, who’s not sorry

18 May

(While we parental units were in Ireland, my sister came out to hold down the fort and keep people alive…and she has some words to say to those who thought this was a bad idea…)

Sorry, I’m not sorry…..

But I just want to take a minute to apologize for not understanding that when I tell people why I’m going to my sister’s and watching my niece, the first thing response I always get every single time is “I’m so sorry” or “It must be so hard”.

Excuse me???

Sorry for what?  Sorry that I’m going to go see a part of my family?  Sorry that I get an opportunity to be a part of my nieces (and nephews) lives?   Sorry that I get to terrorize with them with stories of what would happen to their mother and myself if we didn’t clean our rooms?  Playfully threaten that it was three against four and we are bigger than them, so they better make sure they keep up with their chores now that the all the adults are teamed up?  Sorry they that when ask for McDonald’s, all I ask is for to be good that day at school? Sorry when after an evening bath and tucked into bed (ponies, penguins, and all) she surprised me with a kiss and a “gnight auntie”?


Maura and her auntie

So sorry again, but to me this sounds like something every aunt (and uncle) should look forward too and not have people think that this is some sort of punishment life dealt us.  Maura may have specials needs…she may require special care and she most certainly requires a special kind of patience and understanding…but to me, all it means is she just need is a special kind of love

At the very beginning of this visit, Maura had a meltdown in public…  big time.  I knew it was looming because of how she acted at lunch. Slightly manic… kept mimicking antics of a Hollywood scripted panic attack one we left the house.  BUT it was her older brother’s birthday and he asked to have friends over… you know, the one teen who doesn’t raise fuss, scene, or commotion?  Oh..  you’ve heard of him, but not much else? That’s because he doesn’t raise a fuss, scene, or commotion. So what better gift could Maura do for her big brother on his 18th, was to let him be an 18 year old boy having a pizza party with his friends.  Alone….  No Penguins…. No Frozen… No stealing his day with blossoming tween Maura theatrics.

So burgers with the girls, couple fights over whose shoes which girl wanted to wear (while at Five Guys)  and it was off to Target to buy Sean some birthday gifts.   Right away Maura picked up a map book she wanted and since I got the warning that Maura loves Target when she gets to buy all the things, I thought we did pretty well that she was cooperating with a map book while we bought cards and candy for sean.  So it was at the check out that behind me I heard fussing…..  Well fussing turned into tears…. Tears turned to “mom’s”….. “Mom’s” turned into butt on the ground, hysterical crying, refusing to even stand or stop screaming.

As frustrating as this might sound, this didn’t bother me…everything was paid for… and eventually she would take a moment to breathe,  take a second and actually pay attention to me…. Or for the very least get tired of sitting on the ground and want to go home for more of her favorite penguin cartoon.  Here was a little girl, that doesn’t understand where her mom is, being told no to her normal routine at home and at her favorite store to buy all the things.  So you know what?  In my opinion, I totally get why she’s having this meltdown at this moment.  It’s just going to take us a little longer to get out of the store.

What was frustrating was occasionally looking up to catch looks of pity or even worse, annoyance, on other customers face over a sad and worried little girl just working through her emotions as they checked.  I’m sorry, but what am I supposed to do? Pick up her and drag all 5’2” of her hysterics out of the store? That wasn’t going to happen.  Not take her out on beautiful Saturday afternoon? Still not  going to happen.  Not try to make the most of the only time I’ll have with my nieces for an entire year?  I’m most certainly not going to lock her away at the house for their convenience while running errand, so they don’t have to have to be reminded sometimes life isn’t always easy.

What I will do is learn from that experience a little bit more about Maura.  What makes her tick, what might set her off.  This week she taught me that she needs special attention.  My full,undivided, and patient attention.  Everyday we are all too quick in to get annoyed when things aren’t done quick and easy.  With Maura, if you take the time and listen to her clues, the reward for achieving the most simple of tasks are more fulfilling than any mindless convenience money can by.  I’ve noticed Maura’s growing up, not fast,but she is growing up.  After a storm of emotions passes, she does know when she caused a scene and can sense when she did something wrong and apologizes. She apologetic and as remorseful as she can be.  So why should I approach my time with her as burden?  Why should I accept people’s apologies and sympathies for something they see as being hard.  It’s not me that’s having a hard week,  it’s the little girl that misses her mom that’s having the hardest week of us all.

tea party, yo

tea party, yo


Can you see why I have no problem leaving Maura with my sister? Excuse me while I am thankful for having awesome family members. – Phoebe  


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