When I was about 8 months pregnant (or maybe even more), Quentin brought home a wonderful book. It told us what we could expect every day of the first week of Stellan’s life, and then every month for the first year, and then every six months or so until age five.

I didn’t really read much of it until we actually brought Stellan home because, well, I’m not really one of those “nester” types who does much advance preparation for things. Yes, even for babies. While some of our friends had their kids’ rooms beautiful decorated and totally stocked with baby essentials months before their little ones were due, Quentin and I were busy working right up until the moment Stellan arrived (quite literally) and hadn’t done much reading, let alone decorating.

But nevermind. Stellan arrived and in those first few weeks we had a surprising amount of downtime because he slept so much. (Something that probably wouldn’t have surprised people who had read the book in advance.) But the downtime gave me time to read the book, and I came to enjoy reading about each day the night before it happened, or as it was just starting. And as the days became weeks, and then months, I found that I continued to enjoy reading ahead on what to expect – milestones, firsts, changes – just before they were about to happen. I forced myself not to get way ahead and read about the whole first year in one go, tempting as it often was. It was more fun to reveal it to myself as it was about to unfold.

And unfold it did. For the first few months, anyway. Stellan ate, slept, woke, cried, pooped, and yawned, just like the book said he would. And then at a certain point, the book told us he’d start to smile at us. But he didn’t. The next month we looked forward not only to some smiles, but also to seeing Stellan start to get excited when we’d approach his crib, kick his legs and give us a sign he wanted to be picked up.

But that didn’t happen either. And then a whole list of things started, well, not happening.

He didn’t roll over. He didn’t start to push up. He couldn’t sit. Or even keep his head up, really. He wasn’t batting at toys. He barely even seemed interested in them. He wasn’t doing any of the things the book promised us he would.

Meanwhile, we are very, very lucky to have wonderful next-door neighbors who happen to have a son born three days after Stellan. What could be cooler, we all thought. And it IS cool. It’s wonderful.

But it also is what helped me to realize that what we were dealing with wasn’t just that Stellan was “a little slow hitting his milestones” or “developing at his own speed.” Not in the “normal” sense, anyway. Teddy, at four months or so, started to roll and roll to the point we’d think he would barf, and Stellan would just lie calmly next to him. At around six months, I remember Teddy sitting up in his stroller, holding a soft book in his hands. Stellan could not only not sit up on his own, but rarely had his hands open. He mostly still kept them in tight little fists, like a newborn, and definitely wasn’t holding onto any toys or books.

Well not long after that, after the battery of doctors appointments and tests led to his diagnosis, everything became painfully clear. Stellan, who we joked was just a little lazy or blasé, and whose adorable unsmiling mug in photos prompted all our friends to comment on his perfect “Blue Steel,” wouldn’t be following the rules in that book. He might not follow any rules at all.

Stellan does “Blue Steel”
Stellan does “Blue Steel”

He’s now nearly a year old. Physically, Stellan has the skills of a four month old baby. While other kids his age have already mastered sitting and crawling and are already pulling themselves up and are on their way to walking, Stellan still hasn’t ever rolled over all the way. He has just started occasionally rolling from back to front or front to back. He can’t sit on his own without support from us or a bunch of pillows. He can’t really hold onto items, though he’s really starting to try, and so he can’t feed himself finger foods or entertain himself with toys very well. He mostly keeps his head up, but not always, and actually gave himself a nice little bruise on his forehead during one of his therapy sessions last week, when he got tired and let his head drop forward onto one of his toys. He’s not scooting, crawling, or standing.

But he is smiling. A lot. And even laughing sometimes. And after so many months of no smiles at all, Quentin and I are still over the moon every time we get one of those toothy grins. We used to work hard to get the slightest little reaction, but now every time we walk in the door from work we are greeted with a wide, warm, smile. He’s vocalizing well enough to impress his feeding and speech therapist. He’s very social and aware of his surroundings. All good things.

And he really wants to stand. I mean, REALLY wants to stand.

He’s not supposed to, not yet. Because of the whole “crawl before you walk” thing, yes. But also because when he “stands” he’s actually using what his doctors and therapists call his body tone, flexing every muscle in his little body in a highly spastic fashion in order to achieve what looks like standing. It’s not standing, and he’s really not supposed to do it because we don’t want him to learn incorrect muscle movements and habits which will set him back later.

But every time he does it, the biggest smile spreads across his face. And that’s when I allow myself to have a little bit of hope. That someday he’ll stand on his own, and maybe even walk. Sometimes I even think about him bombing down the bunny slope on skis. But I don’t want to get ahead of myself, or of him. So I enjoy that little smile and then I help him loosen his tense little muscles, and we go back to our exercises.

Someday maybe I’ll get to revisit that book about milestones. But for now, I think it’s better just collecting dust on the shelf. Our milestones are different. Stellan is writing his own book, and we are just along for the ride, celebrating the tiniest of accomplishments as major champagne-worthy events.


Love Z

Thanks, Noelle. I had a yucky day and almost ended it on a yuckier note. Your post is just what I needed to end it all with better thoughts in my head. Stellan’s story is perfect.

(BTW – did you know I live next door to Meg Norton? :-) Her daughter Julia and I are pretty tight, too.)



My heart aches so much every time I read one of your posts. I wish we lived closer.


He will accomplished his milestone in his own terms and time. And because of the effort you all put you will enjoy it a million times more. His smile is beautiful


what a nice smile


You made my morning, lovely, and you will continue to make my day! As long as hes growing, learning and happy, it will be alright :)

Love from way East :)

Ps and one day I will meet him!!


Jon and I will be toasting along with you! xx


This reminds me of one of the best books I’ve read so far. It’s called Bright From the Start, and is written by Jill Stamm, a PhD in pediatric neuroscience who was originally pointed towards that life pursuit by her experience caring for her daughter with cerebral palsy. Her story is incredibly moving, and your the journey you’re describing echoes hers.

She talks a lot about how all kids take different paths at different paces, and so instead of focusing on a child’s milestones, the book is dedicated to activities parents can do with their kids at different stages. I’m sure you guys are well set up with exercises already, but her story of perseverance and all the rewards that came with it are worth reading.


Thanks Morgan, I’m definitely getting that book! xoxo


I second nicoles post, california is dying to bring you back! i know ellie likes it here too…just sayin ;)

He’s rolled over!! That is so exciting! Timelines shmimelines, hes miraculous. Happy almost birthday stellan! Happy smile days and if I can find a grassy hill I might just roll down it in the name of stellan!!



Please make a video of this! :)


Love Stellan’s smile! I think this blog will help many many other parents with a child with special needs. Love from FrEdi

Alex Mata

Great to hear Stellan-the-man is growing stronger, loved reading your post before going to bed. A big hug to you all, he is lucky to have such wonderful parents. Hang in there, life is full of little surprises and miracles, he’ll turn into a little surfer yet, you’ll see.


Con lágrimas en los ojos te escribo para decirte que Stellan es a partir de hoy uno de mis IDOLOS!! Pienso seguir sus pasos (aquellos que todavia no ha dado y los que estoy segura que va a dar) a través de una madre/padre “coraje” como vosotros. En el fondo, no hay nada escrito y todos escribimos nuestro libro.. aunque algunos tengan unos obstáculos más que otros… Dále un beso fuerte a este niño tan hermoso y tan luchador, VIVA Stellan!!


Muchissimas gracias Bertha. Ahora tienes que venir visitarnos a NYC! Para dar un beso a Stellan directamente! Abrazos.xx

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