Dubiously sane things I have done concerning Max...perhaps you can relate?

I was e-mailing with a mom over the weekend; her baby had a stroke at birth, like Max. Until recently, she had measured her baby's head every three days because she worried about microcephaly, a condition in which a head is abnormally small (it indicates the brain isn't developing properly). She joked about getting committed to the psych ward, and I knew just how she felt because I've done that.

For the first year of Max's life, I was obsessed with his head size. It was small, very small. Still is. I'd regularly measure it and dread visits to the neurologist. When Max needed winter hats, I'd buy two sizes: one in the age-appropriate size, one in infant size. Inevitably, only the infant hat would fit, even when he was three. But I kept buying the age-appropriate size hat, as if I could will his poor, sweet little head to fit into it. At some point I finally quit freaking about Max's head size—as long as he made good progress, I decided, that was all that mattered. And he has, thankyouGod, he has.

Over the years, I have done some wacky stuff related to Max, driven by anxiety, fear, terror, love. For the first few weeks after Max was home from the NICU, I slept on our living room couch with him resting on my chest. Literally. I felt I needed to be that close to him to make sure he was still breathing. I can still vividly recall the day my boss at the time called to check in on me. At some point, I mentioned that Max was sleeping on my chest every night. Awkward pause. "Oh! Is that safe?" she asked, logically. I must have seemed so strange.

I have also reached into Max's crib as he slept to massage his hands in the hopes of loosening them from the tight grip of cerebral palsy, stared obsessively at other kids' hands in the mall to see just how open/functional they were in comparison, spoken to Max in different accents to see if he'd notice and, once in a fit of desperation, ate an entire jar of baby food (bananas) to show him how to chew right. Dave has been my partner in special needs lunacy; when Max was little, he used to gargle water to distract Max while we were feeding him so I could get in some food.

OK, here it is, your chance to share the out-there things you've done. That way, they can haul us off all at once to the loony bin!

Hahahahahahahahahahahahahahahahahahahahahaha!!!!!!!!!!!!!!!!

istock/Dennis Cox

Max plays alone (and that's an amazing thing)

A lot of people would have no clue why this video is a big deal. It's just a cute little boy playing with a car and a ramp. But to me, it's miraculous.

When Max was younger, he couldn't play by himself. He was incapable of picking up toys because his hands were tight, he didn't have the attention span, and he usually wasn't interested. So I played with him—and for him—as much as I could, never feeling it was completely enjoyable because, damn, I wanted him to DO things. I wanted him to LEARN. I wanted him to PROGRESS. I wanted him to OVERCOME his delays. I wanted, I wanted, I wanted.

When I'd go to friends' homes for playdates, I'd get distracted from our conversation by the sight of their kids grasping toys, pressing buttons, picking up things big and small. How miraculous their little hands seemed to me. Sometimes, during quiet moments, I'd sit at the dining room table and stare at my own hands. I'd wiggle my fingers, point them up and down, marvel at their intricate movements and the fact that I had two hands that worked fine and I'd never once thought to appreciate them.

I hadn't realized, until I watched Max at play today, just how anxiety-ridden playtime was for me back then. Yet as I stood in the doorway, another layer of grief peeled away and I felt only relief.

The progress has come slowly over the years, but at moments like this it all adds up to something tremendous. There it is, right in front of my eyes, in a little red car swooshing down a purple plastic ramp.

Yet another "aha!" moment about raising a kid with disabilities

Riding the train home from work tonight, I bumped into a woman I know from my city. Her twins were born the same year Max was. I asked how they were doing.

"They're in first grade—it's so hard to believe!" she said.

It hit me then: This would have been Max's first year in elementary school, too. Incredibly enough, that hadn't even occurred to me when September rolled around. I was just excited for Max to go back to the school for kids with special needs that he's in, one that doesn't have grades, per se.

I didn't think "If Max hadn't had that stroke, he would have been in first grade now."

I did not compare him to typically-developing kids.

I did not mourn.

I just took Max's life as it is. And that's a momentous thing.

My mind long ago accepted that I have a child with special needs; I got Max into our state's Early Intervention program when he was a month old, and I've been paving the way for him ever since. It's taken my heart a much longer time to accept those special needs and to cherish Max for the child he is, not the child he could have been. But it's happening. It's really, really happening.