Poppin’ Fresh

Posted: June 10th, 2009 | Author: | Filed under: Cancer, Daddio, Paigey Waigey Wiggle Pop, Parenting, Walking | 1 Comment »

How can it be that yesterday, after the Baby Trio left, Mark and I breathed a huge sigh of relief, picked up Paigey Wiggle, and had a group hug like some back-stage reality show contestants. But today I’m stressed out and sad all over again.

Damn it. Why can’t I just stay in the happy, relieved place?

First off, the three professionals who came here could not have been any nicer. I set a tray with a pitcher of ice water and glasses in front of them, and the physical therapist reacted with such gratitude and appreciation you’d think I served watercress sandwiches fit for a queen.

And you people were so worried!

And Miss Paige. Was. A. Dream. I mean, there’s always that chance that your otherwise good-natured child will act uncharacteristically satanic. Usually during dinners at the homes of childless people. Or, I feared, when she is being OBSERVED.

And nothing feels worse than finding yourself saying, “She never does this. I’ve never seen her act this way!” While laughing nervously. And muttering apologies. And dragging your kid and bags into the car before dessert’s served.

But here’s the thing. Paige had taken a solid three-hour nap that’d make even Marc Weissbluth thump her on the back with praise. She woke up pink-cheeked and chipper. And preceded to perform acts of staggering cuteness—peering up over the coffee table to play peek-a-boo with the case manager. Putting a blankie over her doll and kissing it good night to the delight of the physical therapist. Even, eventually, getting the puzzle pieces in the right places for the child dev expert, and causing Mark and I to beam proudly at each other, and discreetly text MIT we have a live one for them.

She giggled. She clapped. She preformed her butt-scooting crawl just when the PT needed to see it. And she ran through her full course of baby “tricks” all on cue, even though Mark and I realized shamefully that in prompting her do them we were angling for extra credit points.

Be that as it may, our audience took the bait. Paige was a crowd-pleaser. She was Paige. At her best.

At less than an hour in, the PT proclaimed she had a verdict. So to speak.

“It’s not her hip or knee,” she’d said earlier on. “I want to see a few more things, but I suspect it’s something more global.”

My mind made that ahhh-ROOO? noise Scooby does when he’s surprised or confused. But before I could panic, she kindly added, “But nothing-to-worry-about global. By global, I don’t mean huge.”

And breathe!

What it appears Paigey’s wrangling with is a mild case of Benign Congenital Hypotonia. Which in non-doc talk is called Low Tone, and refers to her muscle tone. She’s not walking yet because, as the PT put it, her muscles aren’t strong enough. “Just by feeling her legs I can tell. They’re soft and doughy. More than they should be for a child her age.”

This explains why I’ve always thought of Paige as a dumpling. She really is doughy. And delicious. And sweet enough to eat.

Now a professional’s even said it.

“She will walk. She will run,” the nice lady assured us. “But she’ll always have this. So, I tell parents to lower their expectations. She’ll be able to participate in sports, but she could tire out faster. She probably won’t be a star athlete.”

Thankfully, work with a physical therapist—one hour a week, to be exact—will get her strong enough to walk.

No surgery? No leg braces? And after the ensuing hour-long assessment by the child development gal, no concerns about her smarts, cognitive milestones, social prowess, yadda yadda yadda. This tone thing can be a symptom of some more serious conditions, but, blessedly, Paigey’s is not. Hence the “benign.”

Bonus factoid: If she never crawls, no biggie. Turns out there’s no scientific link to that and learning issues, or anything else wrong or ugly. Yippee!

We were relieved. We were hopeful. We were proud of Paige’s angelic behavior through two hours of testing. We were utterly exhausted.

But today, after a good night’s sleep and a hectic morning including a dance recital, a potluck at the park, and Kate and my tandem meltdowns, well, today different thoughts are whirling through my head.

For one, I recalled that at one point yesterday, one of the therapists referred to Paige as a toddler. A term I’ve never used for her because, well, she doesn’t toddle. I mean, if that alone doesn’t underscore that she’s not doing what she’d supposed to right now—what all the other kids her age are—what does?

During Kate’s dance performance, Paige nearly jumped out of my lap desperate to take part in the Big Girl action. After the show, a grandparent walked past me and remarked, “Looks like it’s time to enroll her in a class.” I could barely muster a courteous smile, as I kissed Paigey’s head and wondered how long it’ll be before she busts a move of her own.

At the picnic, when I relayed the findings to the dance class moms—friendly folks who I don’t know very well—they reacted in a way I hated. Am I just tired and emotionally thrashed, or did they suddenly look at Paige, as she sat a blanket gnawing the rind of a watermelon wedge, with some sorta tragic pity? Like she was all different or something.

One thing the PT lady had said was, once Paigey is up and walking, she might always be less coordinated than some kids, but no one’d ever know that she has this Low Tone thing. She said, Mark and I will only notice it because we know.

Packing up from the picnic, Kate pantie-less after unsuccessfully peeing in the grass and screaming that she didn’t want to leave, I thought of my mother. By now, the impulse to call her has sadly left me altogether. Instead of wanting to talk to her—which now that I think of it is what I want more than anything—I was thinking about how closely she guarded her cancer secret. Even when she weighed 90 pounds and wore a wig that made her look like Nancy Reagan, she’d go to the grocery store and tell me she’d bumped into some old friend and chatted with her but “didn’t tell her.”

We never had the heart to tell Mom that the old friend knew, by just looking at her.

What I know she was avoiding, prideful gal that she was, was people’s sympathy. Their pity. Them treating her differently. And even though I wanted her to be open and honest with her friends about what she was going through—and to attend one of the support groups we littered her house with flyers for—I got that. Even then.

Of course, Paigey’s pudgy muscles hardly warrant the same caliber of pity production. Thank God. And since our Dream Paige Team assured us that after some therapy, no one’ll be the wiser to her tone thing, I think I may take a cue from my mom and not broadcast this to people down the road.

Instead, today at least, I’m going to focus on getting back to that positive place we were at yesterday as we sunk into our group hug. I’m going to keep my eyes on the prize that this little dumpling will walk one day. And you are cordially invited to the blow-out party we’re throwing soon thereafter. (I’ve no doubt my Dad’ll spring for some good champagne.)

Seems these sweet legs were made for walkin’ after all.


1 Comment »

One Comment on “Poppin’ Fresh”

  1. 1 Drea said at 4:31 pm on June 10th, 2009:

    You are perfectly entitled to feel blue and overwhelmed from time to time, my friend – it’s in our job description! It’s a mighty challenging job sometimes, but ultimately more rewarding than anything on earth. Miss Paige is so blessed to have you guys as parents, and as a mom who has faced what some people perceived as heartbreaking challenges, I promise you that she is going to blow you away. The day-to-day progress can seem slow and get you down, but it’s cumulative – and it’s all worth it. Hang in there…

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