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.