A father’s letter to an extraordinary son
It will be years until you can understand this letter, but I want to write it now to reflect on and document a moment of an incredible journey with you. As you will learn, time flies! Anyway, here I go.
When you were in mom’s tummy and we learned you had something called Down syndrome, I read everything I could on it. I learned that most people have 46 chromosomes, which you can think of as tiny capsules that carry nuggets of information that define a lot about you. For example, your chromosomes, or DNA, can tell us what color hair or eyes you have.
To make a long story short, people like you have 47 chromosomes, which is one extra. In my reading I came upon Down syndrome groups that used the slogan “an extraordinary chromosome” to describe people born with that tiny bit of extra life matter.
I have to be honest: I thought it was a cute way to help people with Down syndrome and their families feel better, but I certainly didn’t believe that anything “extraordinary” was going on.
I think this was in part because I’ve been a journalist for 20 years. By nature, people in my profession ask many questions and are always skeptical. More than that, however, I know now I was just afraid. I was afraid of the unknown, afraid we couldn’t meet your needs and afraid of the impact you might have on our family unit.
As I reflect on the 21 months since you were born, I can’t help but feel silly about those fears and foolish about my flat-wrong assessment of what that slogan captures about you and others with Down syndrome. Quite simply, you are extraordinary in many ways, from overcoming the odds against even making it to the world to the things you do everyday and the way you touch the lives of others.
You see, only about half of babies with Down syndrome survive for a variety of reasons. Your own entry into the world wasn’t easy. You came a month early in an emergency C-section and then spent three weeks in neonatal intensive care. Because you were born with a hole in your heart, at three months old you would have a major, open-heart surgery.
I can’t even begin to tell you how nervous I was that day. When the surgeon came out to tell us you had survived, I cried with joy and relief. Still, there was a tough road ahead of you. Your body swelled up so much that you seemed like a different kid. It was hard to look at you, such a small baby, connected to a breathing machine and with IVs coming out of each appendage.
Somehow I know you took it all in stride. Within 10 days you were home, and with a properly functioning heart you began making up for the months when you could do very little; Before your surgery, you would tire even taking a bottle.
It wasn’t long before you started showing us your personality. As you know, you have two older brothers who adore you (more on that later). While the two of them and of course all children are special, you have a uniqueness that reaches those around you in ways I’m still trying to articulate.
When you hear music, or anything that even has a beat, you start moving your hips and waving your arms. You frequently start clapping spontaneously, encouraging others to let loose and embrace the moment. And you are always smiling, a flirtatious flicker in your eyes that can light up a room. At church, and at your brothers’ school, other kids always come up to you to see what you are up to. I know this is likely in part because you look a little different, and there is a curiosity factor. But it’s so much more than that: your unique way of seeing the world and interacting touches others.
Your life is already very different than that of most kids. You go to several physical and speech therapies every week, being pushed and prodded to do things you probably wouldn’t otherwise. Even then you are smiling, though every now and then you do put on a “boo-boo” face to express exhaustion and frustration.
Similar to other developmental benchmarks, you are behind most kids when it comes to speaking. At 21 months, you only say a few words. Still, you are a good communicator, telling us through gestures, grunts and facial expressions what you want. And you understand everything a toddler can be expected to _ in three languages. It’s English with me, Spanish with mom (a mix of those two with your brothers) and Portuguese with therapists and everybody else in Brazil. I think that is pretty cool. There is also this: You have already overcome more in your young life than many kids will ever have to, so I have no doubt that you will continue battling and accomplish everything you want. Quite simply, you are a little warrior.
The impact you have had on our family is incalculable. It’s not just that you are the baby and demand lots of attention. You have also become our center, our heart. Everybody is intensely interested in the latest and greatest things you are up to, which lately has been trying to get into places you shouldn’t, like the bathroom, where you find plunging your hands into the toilet wildly interesting, or the kitchen, where you start pulling out pots and pans.
At some point along the way we gave you the nickname “Little Buddy,” and sometimes it feels like you have become royalty.
“Hey there, Mr. Buddy. How are you?” says one of your brothers.
“Mommy, the Buddy wants his milk,” says the other.
I don’t want to gloss over the challenges ahead, both for you as an individual with Down syndrome and for the rest of the family. That extra chromosome has far-reaching implications in many facets of life. I also know that extra chromosome is part of what makes you the person you are, and you truly are extraordinary.