Max walks up stairs by himself for the first time: the video

For a couple of years now, Max's physical therapists at school have been working on getting him to independently walk up and down stairs. This is tricky for him, because it involves grasping a railing (Max's hands don't always like to open up fully), core strength and coordination.

Using stairs is one of those things I never once in my life thought about until I had Max. After he started walking at age 3, I realized just how many movements are required to get you up and down stairs. Max has given me all sorts of new perspective on (and appreciation of) the ways bodies work.

I've always held Max's hand and supported his back as he walks up stairs in our home. Going down is harder for him and more perilous, and makes my heart lurch every time.

And then. We were on vacation at Smuggler's Notch, and Max decided to go up the stairs alone to our condo.

I was giddy. Jump and down and squeal "YEAH, MAX!" giddy.

What I also loved: How proud Max was of every single, hard-earned step.

When milestones like this happen, I flash back to my first meeting with Sue, the most lovely Early Intervention coordinator. Max was a month old. He lay on a blanket on the living room floor as I told her what had happened to him, and my fears about his future. Sue stared at me kindly. "He will surprise and amaze you, you'll see," she said.

He's never stopped.

Experts for children with special needs: that would be us

Like me, I'm sure you have your own team of experts for children with special needs. Like me, I'm sure at this point you could qualify as an expert.

This is on my mind because today I read a fascinating New Yorker article, The Hot Spotters, that mentioned an inspiring doctor, Jeffrey Brenner, who works in an impoverished city in New Jersey. After he started reaching out to locals with the heaviest medical needs and giving them more personalized attention, he cut their hospital visits by 40 percent and their medical expenditures in half. I loved this quote:

"My philosophy about primary care is that the only person who has changed anyone's life is their mother. The reason is that she cares about them, and she says the same simple thing over and over and over."

It's so very true, especially when you're raising a kid with special needs—although obviously, there are plenty of caring dads out there, too. And to be sure, we have a veritable team of experts: assorted therapists, teachers, a pediatric neurologist, a developmental pediatrician, a physiatrist. But ultimately, Max's care boils down to me and Dave. Some days, the responsibility feels too great and I wish there were an actual expert overseeing Team Max. I want to make sure we're doing whatever possible to make Max's life better, easier, and more enjoyable. I want to make sure we're enabling him to get past his physical challenges and make his way in this world.

The other week, I realized we needed an adaptive handle for our phone so Max could better pick it up. Duh. The occupational therapist who sees Max at home hadn't thought to recommend it, and it had never before occurred to me, either. Max doesn't ask to make calls—but maybe he would if there were a phone he could more easily grab. The OT got the above handle and attached it the other day. So far, Max hasn't been dialing up girls, ordering things from infomercials, or prank calling, though I can just imagine that conversation:

Stranger: "Who is this?"
Max: "Ur-ul AX!" ["Purple MAX!"]
Stranger: "Huh? Who is this?"
Max: "Ur-ul AX!"
Stranger: "You have the wrong number!"
Max: "Ur-ul AX!"

I'm glad the phone handle occurred to me. I wonder what other stuff we're not thinking about that could help Max. But there's just me and Dave and Team Max, doing the best we can.

I stared at an adult with disabilities, and wondered if I was seeing Max's future

I am sitting in the Whole Foods food court. I sometimes come here to work during the afternoon, when it's impossible to get stuff done at home. Sabrina is constantly by my side, wanting to go on the computer and mess around. Small wonder—she sees me on it all the time. "The Apple [computer] doesn't fall far from the tree," Dave likes to say.

So, here I am in Whole Foods. A woman's cleaning the tables. She has Down syndrome.

I watch her from behind my computer screen. She's pretty, with short, swingy brown hair, and precise in her movements: tear off two paper towels, fold neatly in half, spritz the table with cleaner, wipe in small circles.

As she sprays and wipes the tables, she is murmuring to herself and smiling. I wonder what she is saying.

I return my eyes to my computer screen, only I do not really see it. Because my mind is racing and I am thinking only about whether this is the sort of job Max might have someday.

This was not my plan for my child. Not that I had a specific plan, but it vaguely included brilliance, a top-notch college and a high-powered job. It did not include cleaning tables, mopping floors, pushing the mail cart around an office or other jobs I have seen people with disabilities doing.

Quit thinking like that, I command myself. How absolutely awful and demeaning to impose your idea of "success" on her. This is her job. It is a respectable job at a nice place. She takes pride in what she's doing.

Oh my God, if you write about this you might tick off the people with disabilities who read your blog. They will think you are slamming them.

But I am not slamming them. This is about a parent's latent grief. This is about letting go.

Seven years after Max's birth, I still mourn the loss of the child I expected, even though I love and adore the child that he is. And I think that is something you can only understand if you are a parent of a child with disabilities, not an adult with disabilities. Seeing an adult who's handicapped is a shock to the system, the same way I feel when the toy catalogs for disabled kids arrive in the mail, or when I am at the play area in the mall surrounded by kids clambering all over things and there's Max, struggling to climb a step. Except that seeing an adult who's disabled is even more unnerving; it is my fear of the future staring me in the face.

I have accepted Max the Child with disabilities; I have not yet come to terms with Max the Adult with disabilities. I will grow into it, I know, in the same way I grew to understand and accept Max's challenges. But right now, it is too difficult for me to grasp. And too painful.

I know that other moms have similar feelings. A reader recently e-mailed me about a friend of hers with a disabled kid who got livid when her son's counselor suggested that he could be a bagger at a supermarket.

I look up again and see her smiling sweetly to herself.

And suddenly, in the middle of Whole Foods food court on a sunny winter afternoon, I am getting choked up.

Crap.

Stop it. Just stop it, I tell myself. You do not know how Max will turn out or what his abilities will be. Who knows what will happen. Whatever he is like, whatever his abilities, he will be OK.

And then, I am calm again.

And she is still cleaning: tear, fold, wipe.

And she is smiling again.

And she seems perfectly content.

What happened to Max: Up to the moment we knew something was terribly wrong

This is me standing on our deck on Dec 4, 2002, my due date. I get both happy and sad looking at this photo. Happy because I look so excited. And that's Max, beautiful Max, inside my big belly. Sad because I obviously had no idea what hell the future held.

It had been the snowiest winter in years, and Dave and I kept worrying that we wouldn't be able to make it to the hospital. That snowy day, though, I wasn't ready to go; I'd loved being pregnant.

I'd had a wonderful nine months. Some intense exhaustion during the first trimester, no nausea. After that, I was my usual high-energy self. I've never been the most thin person in the world, so having a bulging stomach didn't bug me. I loved feeling the baby moving inside me, loved hearing the galloping heartbeat at the sonograms and seeing the shadowy blob who would be my child, loved eating with abandon. In the evening, when I came home from work and Dave met me at the train, I'd raise my shirt as I walked over to the car and show him my belly, like a flasher, and we'd laugh every time. For entertainment, we'd lie in bed and watch my belly ripple.

We were so ready for Max.

I had a history only of baby love. I babysat from age 10 on, was a camp counselor in my teens, volunteered at a cancer hospital's pediatric playroom in my twenties, ogled babies on the street all the time. I assumed, with what I now see as hubris, that my baby would be born healthy. I was. We'd had no trouble conceiving. My pregnancy was uneventful.

We painted the baby's room a cheery apple green, spent way too much on fancy crib bedding, took a childbirth/newborn class in which Dave had such trouble getting the diaper on the doll I thought I would go into labor right then and there from laughing so hard. We were both hoping for a boy, even if we wouldn't admit it. We'd decided on Max, and Mia if it were a girl. We liked Max a lot more. It seemed like such a strong, feisty name. My mother, knowing that we were looking for an 'M' name in memory of my grandma Minnie, didn't like Mia and had inexplicably suggested "Mignon." My response: "And her middle name can be Filet!"

At around 5 a.m. Tuesday, December 9, I woke up feeling crampy. I dialed the doctor on call and she told us to drive to the hospital. I remember standing in the shower and thinking, Last shower before I become a mom.

At the hospital, I got pitocin to induce labor, then an epidural that didn't work, then a second one after I said some obnoxious lady-in-labor things to the anesthesiologist. But, nothing. Hours went by. I wasn't allowed to eat yet that didn't stop Dave from downing a big Subway sandwich in front of my face (some things, you never forget). Several times, I was given oxygen. Finally, I started pushing. The doctor was not my usual beloved one; I'd met him only once before. There were two nurses. We chatted and even laughed, about what, I don't recall.

Max didn't progress. Me being me, I wanted to keep pushing. Finally, around 11:00 p.m., they decided on a C-section. It wasn't an emergency or anything; it was all pretty calm.

They wheeled me into the operating room, covered my lower half with a sheet, drugged me up at some point. I felt a lot of pressure, then suddenly heard a baby's wail. "You have a boy," a doctor said (there were a few of them in there). Dave got to hold Max first. He was standing behind me, and I can vividly picture looking over my shoulder and seeing him staring so wondrously at the bundle in his arms. He was in awe, and he was in love.

Max was pink and perfect, not at all wrinkly or ET-like as newborns can be. He had amazing Apgar scores. "Even pediatricians' kids don't have Apgars like that!" a doctor joked.

The rest of the night is a blur: cuddling Max in a tiny room where they parked me while they waited for a real room to open up. Me not quite believing that, yes, an actual baby had been inside me all those months. This one. Begging for water and being told I wasn't allowed to drink, then making Dave smuggle in a cup of ice chips. Finally getting a room. Trying to breastfeed in the dark for the first time as Max cried and wouldn't latch on but kinda-sorta finally did. And then, morning.

My mother and sister came to visit at around 11. As I tried to feed Max, he stopped breathing and turned blue. Dave ran out and got a nurse. She came in and whacked Max on the back. "Mucus!" she said, by way of explanation. My mother and sister looked worried. Max seemed OK after that.

A couple hours later, as I held him, he stopped breathing again. This time they whisked him away to the NICU.

My body was healing from the C-section and I still wasn't able to walk, so Dave kept going to see Max, who was in an incubator. I forced myself to get up in the early evening. As we waited at the elevator bank to go to the NICU, there was a doctor standing there. Glasses, young, a little nerdy. He nodded at us. 

"Did they use forceps during your delivery?" he suddenly asked. I'd never seen this doctor before, and thought it was a bizarre question (as it turned out, Dave had spoken with him in the NICU). I figured maybe he was looking for people for some research project or something. 

"No," I said. "Why?"

"Because your baby is having seizures," he answered.

And that's the moment when I went from the happiest day of my life to the most devastating one. I couldn't have imagined how much worse things were going to get.

Part 2: The day we found out babies can have strokes