Saturday, January 9, 2010

Birthday Boy

My little Jukie had a birthday this week. He turned nine years old. And everyone who I tell responds the same way: “NINE?? That’s so hard to believe.” To some extent, every mom hears those comments about her children; the time flies. But, as with everything else with Jukie, each birthday in this case is a little extra special.

First, there’s his size. Like all of his fellow buds with Smith-Lemli-Opitz Syndrome, Jukie is small, about the size of a five or six year-old boy. Strangers inquire all the time about his age. I guess they’re mostly trying to make sense of the sweet, unusual sight in front of them – a silly, impetuous, (ch)imp, with a shock of red hair, and a big red chewy sticking out of his mouth. “He’s nine,” I’ll now say, and watch the inquiring minds and eyes widen. The size gap between my boys (Truman, four and a half years younger) narrows each year.

I used to get depressed with each of Jukie’s birthdays. With each passing year came a reminder of the many milestones he wasn’t reaching. He didn’t have friends. Finding appropriate gifts for him has always been difficult. What do you get the boy who doesn’t really play with toys, except to break or eat them? And as birthdays never really held meaning for him, he never had a traditional birthday party. To me his birthdays didn’t seem like occasions for celebration.

Fortunately for Jukie, I’ve evolved. I’ve come to realize that children’s birthdays are also reasons for parents to celebrate. I celebrate how far we as his parents have come, and that we have survived another year with our boy. I focus on Jukie’s many strengths, on what he can do, and not just on the ways he struggles. I also see how far Jukie has come! His development is so incrementally slow that I sometimes have to step back to examine his growth. Visiting friends and family who haven’t seen Jukie for a year or more point out (sometimes with surprise or relief) those emerging strengths of Jukie’s that are sometimes hard for me to recognize. Over the last two years, he has become much more calm. He can now sit for long periods of focused time. He communicates well with PECS (Picture Exchange Communication System). He’s more engaged and responsive with us. Perhaps it sounds funny, but Jukie can be a well-behaved boy! We take him to restaurants, art galleries, concerts, movies, on airplanes… and he usually tries to behave well everywhere we go. He’s more fun than ever! And with his new habit of making kissing sounds when he waves hello and goodbye, he gets impossibly sweeter every day.

And so this last birthday was cause for great celebration. We doted on the boy all day long. Whereas he normally may average 25 Mommy kisses in a day, on his birthday he received probably 200. We served him his favorite foods: tofu with cornbread for dessert. We gave him new beloved toys which spin and make noise. And I thought to myself that all of the reasons that I used to get depressed don’t matter at all to Jukie. He already knew these lessons, the lessons which took his mommy nine years to learn.

Happy birthday, sweet, sweet Jukie! I am so lucky to be your mom.


  1. That is so incredible! So much of your experience with Jukie resonates so near with my experience of raising Ulysses. Thank you for writing this blog it is so validating and for me decreases the isolation that can come with the experience of raising the Ulys and Jukies of the world. Uly turned 9 in September and well...I'm still processing this. Uly is little Jukie and Uly too is becoming more of a joy to be round. Such a blessing. And us as parents get to revel in the profundity of major achievements that Uly and Jukie exerience...accomplishments that we get to truly savior as parents cause we've been there every tiny step of the way and we've worked so hard to help them to work so hard with their abundance of gifts and wonderment which come forth from their struggles with things that we might have otherwise taken for granted. And yes we still get the glares and the eyes getting wider yet I seem to notice less and less as they eye wideners and all notice more and more :)

  2. Jukie has transformed in the two years I have now known him. While his favorite activity used to seem to be dumping any bin full of countless items, he now loves to sit and look at books by the window.

    He's become so aware of us actions. He'll know full well what we ask of him and then go do completely the opposite with that huge smile on his face or giddy laughter. Then, once he's reached a wall (usually the book area) he'll stop and wait for you to come redirect him, pleased that he had made it as far as he had.

    He's such a joy to have around. If I were to give him two birthday presents, I'd give him a new board book and a trashcan. The latter for him to sit in. I'd have to do some investigating to make sure the size was just right for him to fit in snuggly. He would also like a large apple-bobbing plastic container with two handles. He'd need two adults, but he'd show you what to do in order to get to his right swinging height.

    I've gone 23 days without Jukie. Luckily, I only have 18 hours left. Happy belated birthday, Jukie!