When our sweet Sam was born with Down syndrome in February 2012, my husband and I didn’t know what to expect. Sam was a birth diagnosis, and while I knew a little (emphasis on little!) about Down syndrome, my husband knew virtually nothing. I remember him whispering to me in the hospital, with tears pooled in his eyes, “Will he ever be able to talk? Will he even know who we are?” Yes, I assured Chris, he would know who we were. I knew that people with Down syndrome could indeed recognize people and talk and have relationships, but that’s pretty much all I knew.
Oh, how much we had to learn! How little we knew about the golden moments that lay ahead of us. Sam not only knows us (and has pretty much since day one), he has strong attachments with many friends and family members, as well as his teachers as Early Intervention. And talking? He’s starting to do that, too—and he’s a signing ninja!
At 2 1/2 years old, Sam is walking, signing, starting to talk, eating and drinking semi-independently, identifying animals and objects and colors, making his likes and dislikes very well known (as any good toddler will do!), looking at books, following a bedtime routine, and doing so many other very typical toddler things that I can’t even begin to name them all. And every single one of those achievements has been a golden moment. It is a sweet moment when any child achieves a milestone; I cried plenty of tears when our older son started to crawl, then took his first steps, started to talk, and so on. But it is profoundly sweeter when you have watched a child with special needs work so much harder to achieve the same goal that another child achieves seemingly effortlessly. Instead of shedding a couple of happy tears, your heart swells up so big you fear you’ll pop the buttons on your shirt, and the tears don’t drop from your eyes—they gush. When Sam finally took his first wobbling steps at age 27 months, it was a series of about four steps from his physical therapist to me after an unbelievable screaming fest where he acted as if he were being tortured. But when he wobbled forward on those impossibly tiny feet and his face lit up in a huge smile at his accomplishment, I bawled. And then practically took out the Facebook equivalent of a billboard advertising the accomplishment.
But no matter how golden moments like that are—and make no mistake, they are golden—hands down the goldenest of the golden moments are the ones where I catch sight of my two boys together, often when they have no idea that I can see them.
You see, there’s this perception in the outside world that if you bring a child with Down syndrome into the world, you’re bringing a burden into the world. Not just a burden on yourself or on taxpayers (though we hear that too, for sure)—a burden on that child’s siblings. How can it be good for children to grow up with a disabled sibling, some wonder? The typical child will suffer ridicule for her sibling, or she’ll feel obligated to look out for her sibling at school. Or later, the typical child as an adult will have to provide for his disabled sibling—either financially or in the form of a place to live.
Well, that’s simply not true. From a practical standpoint, if parents are careful and wise, they can set up trusts and such to ensure that their child is cared for his or her whole life. I’m not going to go into the specifics on how to do so, as it’s not my point in this blog post. But the resources are out there, and it can be done relatively easily. There is very little reason why a sibling would ever have to be “burdened” by a disabled sibling.
And as for the ridicule for having a sibling with a disability? Well, yes, I imagine that will happen at some point. But most children face ridicule for something along the way; few escape the perils of the school years without having been teased or bullied about something. And at the risk of sounding harsh, isn’t there an element of character-building here? Anecdotally, it seems that most children who have a sibling with a disability are fiercely protective of that sibling, and standing up for someone who is being marginalized is a pretty darn good way to build character. I know if our older son, Theo, is ever faced with such a situation and stands up for Sam, I will be incredibly proud of him. Do I want Theo and Sam to face this sort of situation? Not particularly…but it’s also not something that keeps me up nights worrying. It’ll probably happen at some point, and we will all move past it.
If you want statistics, I urge you to look to a study done by Brian Skotko, Sue Levine, and Rick Goldstein. They surveyed more than 3,000 families nationwide that have a member with Down syndrome and published the results in the American Journal of Medical Genetics. Their results showed that 97% of brothers and sisters ages 9–11 report that they love their sibling; that among siblings ages 12 and older, 97% reported that they were proud of their sibling with Down syndrome; and that 88% said they are better people because of their sibling. I always take statistics with a grain of salt, given how they can be manipulated, but those are some pretty impressive statistics—grain of salt or not.
To be honest, in those moments after we had Sam, how his diagnosis would affect Theo never entered my mind. I knew Theo would be a good and loving big brother to Sam, and the fact that an extra chromosome might change that never occurred to me. The only thing that did occur to me was that the costs associated with raising Sam might make it harder to provide financially for Theo. But I turned out to be wrong on that—there are therapy-related costs, of course, but they haven’t been so high that they’ve impacted our ability to raise Theo. And when setting up a special-needs trust for Sam, we were pleasantly surprised to find out that even though we aren’t wealthy by any means, we can certainly still afford to send Theo to college someday if he chooses to go.
So I may have been wrong about the financial aspects and what that would mean for Theo, but I was most certainly not wrong about Theo’s ability to be a good big brother to Sam. And I wasn’t wrong about the fact that this new baby boy of ours would adore his older brother. The two of them are thick as thieves, and seeing them together is absolutely the best of the golden moments. Most mornings before school, they have a little dance party. Theo cranks up either John Philip Sousa marches or some AC/DC rock, and the two of them rock out in the playroom, with Theo playing the electric guitar and Sam waving a stick around and whooping and hollering. In the car, they amuse each other making silly sounds. At mealtime, Theo insists that Sam is more willing to eat from him than he is from me. (That one is arguable, but I admire his persistence!)
They conspire, too. Recently Theo was angry at me for taking some inappropriate music off of an iPod that he wanted to listen to, and I heard him stomp downstairs and say, “Sam! We need to show them! I’ll show you what we’ll do! I know how we’ll get their attention!” Sam muttered happily and followed along, and the two of them hatched an elaborate plan that involved cranking up Tom Petty to an annoying level. “See, Sam? This’ll do it! This’ll get their attention!”
And when Theo is angry and declaring all the dire consequences that will befall us for being the Very Worst Parents in the World, he always includes Sam in his plans. “When me and Sam are grown up, Mom, we’re going to live in our own house and make our own rules! And you won’t be able to tell us what to do!” I’ve heard many variations of the “When me and Sam are grown up…” story from Theo, and they all involve he and his brother, against the world.
So if you ask me what the goldenest of the golden moments are, I’ll tell you this: Two blond heads, one curly and one pin-straight, leaning together and smiling at each other adoringly. Or two blond heads, one curly and one straight, bopping away as they dance their hearts out to “Stars and Stripes Forever” or “Back in Black.” Or one pin-straight blond head invading his brother’s personal space, doing every annoying little-brother thing he can think of to get his big brother’s attention, while big brother says, “Sam! Enough!”…but with the biggest, brightest smile on his face.
That, my friends, is my definition of a golden moment.