I think that there's lots of common wisdom parenting guidance for when our kids are little. As they become teens, there's more advice available too: how to keep them safe, responsible, drug-free, how to help them find their identity and sense of being in the world.

I'm missing the emotional parenting guidebook to the eight-year-old set. There's some stuff out there, but it seems defensive: how to keep them little, how to keep at bay the forces of evil that foist terrible teen stuff onto the preteen set.

That doesn't help me. I want a positive guidebook, with pages that tell you about the rites of passage you don't expect, that hold the keys to delight. I'm realizing over and again that what I want to be expressing is the happiness of parenting, that amid the tedium, the frustrations, the worries about their health, and the boredom of reminding them a million times that tossing their dirty clothes on the floor next to their bed is not as good as using a laundry hamper, there are moments, slivers of seconds, even, that bring exquisite joy.

That's the book I'm looking for: a straightforward attempt to note the joy in our lives.


The rite of passage I experienced: reuniting with my daughter Samira after she was away for 2 1/2 days. I walked into the music room where she and all the kids were gathered with their sleeping bags and gear and I soaked in the aura of happiness. I saw an eight-year-old girl who looked three inches taller and a year older. Her light brown hair was down and it flowed over her shoulders, and she had that I've-been-on-a-camping-trip-haven't-brushed-my-hair-for-two-weeks look of total calm, of really living in her body. She ran over to hug me. She hugged one of the teachers goodbye, the teacher grinned and told me everyone had had an awesome time. We left the building, forged our way through the sleety rain back to the car, and when she got in, transferring back to the world of family, I saw in her that pull: when you're really living in a social world that's different from home, for the first time, and you know that you can get by without your parents.

I remember that rite of passage so well; how incredible to experience it as a parent, to feel your child's confidence, and to know you had a part in letting that confidence build.

The book I want has a checklist of moments like these, and empty space to write them in when they happen. It's the elementary years version of the baby book, isn't it.

Later, when I asked Samira which of the kids she thought enjoyed the trip the most, she grinned and said, "Me." And then she conked out, and was fast asleep by 6 pm, dreaming, no doubt, of climbing 11-foot walls, and wading in late winter streams, and feeling the warmth of after dinner bonfires, surrounded by friends.

Samira has been away since Wednesday, off to Outdoor School. I miss her like crazy, but I admit I love the silence. I love not preparing dinner for the family. I adore the solitude, the days where the clock doesn't start ticking its way from wake-up to bus pick-up. 

She's such a grown-up kid, away for the first time on a school trip. She'll undoubtedly return filled with science and nature facts, fun tales about the ropes course and 10-foot wall they scaled, gossip about her classmates' PJ's and who was homesick. And of course, she'll come home soaking wet, since beautiful weather yesterday and the day before was followed by today's dreary rain. I'll have to scoot over to Various Ramblings, to see what she has to say, since her daughter's on the trip too (VR has just finished radiation, so that's two homecomings to celebrate).

The parenting books don't tell you about the rite of passage when your baby starts to leave home.

Oh yeah, and the baby will need foot braces too. This more than anything made her condition real. On the PT's first day, he asked us to take off Amelia's socks. He said breezily that most low-tone kids have flat feet, and pronate (which means their feet turn in, and all their weight goes on the inner foot bones, which aren't made for carrying so much weight). Sure enough, A's cute little feet were pronating when she stood. Good thing the braces aren't those full-length heavy wood contraptions, that even in my 70's childhood were antique, though I admit, that's what first came to mind.

Braces. Boo. At least it's 2007 and they're small, flexible, and come in fifteen colorful and cute designs.

That's a phrase I came across on a chat board over the weekend, and I'm finding it very helpful. As I search around to make sense of the baby's disability, I find myself in the cordoned-off world of mothers of special needs children. (Where the fathers are, clearly, is a question, since they are largely absent online.) I don't yet even know what to call this condition my baby finds herself in. It's not as comprehensible as it would be had she a named disease. That's probably, at this point, a good thing, and perhaps I'd be in this murk anyway, treading from a world in which we laugh at all those developmental milestones and the cultural assumptions behind them, because our children pass them by with nary a thought, into this new place where they mean something medical and real, where it's not our assumptions about proper achievement, but the tension of muscles and the neurologic impulses of the brain that rule the day.

I don't even know what this condition is; the medical literature tells me hypotonia is a symptom of something else, but that something else hasn't yet and might never be discovered. Does she have a condition? A disease? I can't quite think of her as disabled, really. Until I realize that we are receiving all these Sweden-like free services because the state has marked her as disabled, and as such has taken it as it's interest to make sure she is pulled back to the normal mainstream.

The phrase I found was Anticipatory Anxiety. It was used to describe the anxiety we feel, we create when there's a loved one in our life with a condition whose future we don't know. The anxious musing that takes over when we're caught up in wanting to know the unknowable or in imagining different possibilities--usually the worst ones--that's anticipatory anxiety, when, as I'm prone to do, I begin to rue the day when we'll have to sell our home and move to the suburbs for a school district with good special education. The reminder was to keep it at bay, to live more in the moment when we can. As in: I have no idea what the baby's future will be, what special attention she'll need; why am I already imagining packing to leave my life as I know it?

This is my lesson: to grab the goodness of each day, the sweet moments, the love, the most excellent scene on Sunday afternoon of the neighborhood kids constructing a zipline from the treehouse deck to a fence a few feet and a lawn away, and working really hard to make it work (image for the day: 20 wire hangers wrapped in duct tape to make a contraption for their hands as they swing). The crazy thing: these health-scare conditions that are longterm are what turns us around to focus, instead, on the pleasures of the everyday.

Therapy Week Two. We start by reminding everyone that I am a quiet sort of soul, the kind who prefers to work at home, and who already has two different babysitters in her life, lovely babysitters, absolutely, but daily reminders that I have somehow veered off my life's path of becoming one of those elderly North Carolina gentlemen who sit in solitude, through the day's length, waving kindly and slowly to all passersby from the social safety of the green rocking chairs on their front porch.

Add to this path-veering two new people, named here as the OT and the PT (and who, to protect their privacy will never be named or described). OT comes on Tuesday afternoon, PT arrives with the breath of the morning wind on Fridays, early (though we had an additional session this morning, just a day later).

It's been the oddest of weeks, filled with attempts to google "hypotonia" or "infant low muscle tone," which on one hand finds me, in ten clicks, an excellent iVillage discussion board, several neurology Q and A's from a clinic in Cleveland, and a very sweet, bare bones site written by a child, now grown, who dealt with hypotonia his entire life. I imagine all the follow-up testing we'll have to do, after reading accounts by mothers who have passed their young children through gauntlets of neurologists and geneticists, only to learn that a) no apparent cause is discernible, or b) a cause has been found, but it's untreatable and incurable, anyway. Plan: continue with therapy interventions. I worry, because we too, are headed down this path, perhaps, ready to immerse in a world we are unprepared for and have not yet found a wise mentor to help us navigate.

At the other, I read descriptions of babies who are so floppy they can't sit, and can't nurse, and I think that Amelia is quite moderate. I sheepishly asked this question of the PT this morning, and he agreed, saying that most likely Amelia will be fine. I start counting her small achievements, like how at this morning's breakfast, no Cheerios feel on the floor. Because of the way she grips and grabs all the  Cheerios in her hand at once, half tumble to the ground (usually to be squashed into the floor by everyone else). Today: nothing. Perhaps already she's getting stronger. At this end I am in the moment.

Last Friday morning we put Samira on the school bus, then bundled up the baby, pulled out our umbrellas against the rain and headed to our long-awaited appointment at Children's Hospital. My first impression came after we had found parking and wound our way into the waiting room for the Development Center. I was filled with gratitude for life. CHOP has that effect on me. I can be fussing my way through life, frustrated at the health challenges that our family faces and silently glaring at friends whose kids are healthy and fine. When I get there, the feeling turns around. I am profoundly glad that my baby doesn't have cancer. That she doesn't have a regressive metabolic disease like Canavan's that will kill her, or pull her into an interiority that makes autism look friendly. That she can breath without an oxygen tank.

One of the kids in the waiting room was deaf, and had two very large hearing aids. Her mother was signing to her. I wondered how in my schedule I would fit in the time it takes to learn sign language, were my baby deaf.

It puts our challenges in perspective. It doesn't make them go away, and it doesn't minimalize them, but it puts them into perspective.

Amelia was evaluated for two hours by a developmental pediatrician. We got the inside scoop on why it's so hard to get an appointment. Seems there's so much suspicion of autism these days that many families will have their kids evaluated just to make sure, to reassure the parents. That's from the doctor's mouth. Doesn't explain why they don't hire more doctors, but it did help to get an explanation. Amelia had to pull a red toy, find blocks hidden under a napkin. She had to put increasingly small objects into ever-more-narrow bottles. We even had a CSI moment where the lights were turned off and the doctor used a very cool black light to examine the baby's body. By that time I was too tired to ask why and for what, I was just happy that nothing other than random, soap-fleck related spots turned up.

Final analysis: the baby is fine cognitively. She definitely has muscle delays, and poor muscle tone: hypotonia. The good news is hypotonia can have benign, unknowable causes. Also good is that Amelia doesn't seem to be as hypotonic as babies can be. She could be much floppier, it turns out, and have a longer road to travel toward health. The bad news is the doctor wants us to follow up at the neuro-muscular clinic, just to make sure that her condition isn't s symptom of any other disease.

There's much relief in our family. We still wonder whether there's an underlying cause, and it will take some time to learn that. We still can learn that something terrible has happened. The baby's on the road to improvement, though. Her occupational therapy started yesterday and her physical therapy starts later this week (we'll just call her Therapy Baby from now on). I know it will be a slow and steady process of helping her build strength, despite having low tone muscles that don't take easily to strength-building.

At least at this point she has conditions, and not diseases. That's a distinction that matters.

Resources for stressed-out parents of babies-with-challenges, anyone? I can't believe I've gone through eight years of being a parent without really getting what it's like when your baby isn't healthy and well.

The best news of all: Amelia is happy and sweet and smiles and plays with toys. I hope she never has a sense of any of this, and that we, her parents, can keep calm enough so that she has no idea of the stress we've experienced.

Hug the children close.