Happy World Down Syndrome Day!

Today is March 21st--3/21. Some awesome person or group of people decided 6 years ago to proclaim it World Down Syndrome Day, in honor of the 3rd copy of the 21st chromosome, which 95% of individuals with Ds have (the other 5% have translocation or mosaic Ds, which you can read about here). This year is the 1st year that the United Nations has officially recognized it. Here's a statement they published about it. My dream is that this means there are big changes on the horizon in the way individuals with Ds are perceived and treated throughout the world....

What this day means to me is, in part, that my Facebook news feed (I think 300 of my FB friends are Ds parents. And I belong to no fewer than 7 Facebook groups for families of kids with Ds. The Ds community is what I love 2nd best about having Colin in my life) is jam-packed with happy wishes and photos of beautiful people of all ages who rock that extra chromosome. Online and in real life, families of these amazing people are proclaiming to the world: "Look! Look at my family member! We love him! He's amazing and bright and sunny, and we're SO PROUD! Our family wouldn't be the same without him. We are forever changed because of the influence his life has had on our own. Please take a closer look so you can REALLY SEE all of the GOOD he has to offer." I'm a crying mess today--the joy I feel is too great to contain.

What I feel today stands in stark contrast to the feelings I had immediately post-diagnosis, when Colin was still incubating, an unseen little bundle of flutters and tiny kicks. The doctor's words, "The amnio results came back positive for Down syndrome" felt as devastating to me as a death sentence. My reaction to this news was extreme, and dark, and desperate. Most of the 3 or 4 following days were spent in a sobbing heap on my bed with all of the most intense feelings that come with grief--anger, denial, self-pity, fear, desperate bargaining with God--swirling and knotting themselves together so tightly in my heart that I felt for sure it would burst. In fact, my kids even whispered to my husband, "Is Mom gonna die?" (I've never been one to stoically hold my feelings inside....) The pain I felt was raw and suffocating. It's difficult for me to understand now how my reaction could have been that overwhelmingly intense. How could I have been so ridiculously afraid of something as amazing as life is with my sweet little Colin? I don't understand that grief, now that I'm "on the other side" of it. It feels weird and foreign. I'm embarrassed for having reacted so violently. And yet, every day, a good percentage of women who receive a Ds diagnosis will react in much the same way I did. What are we so afraid of? I believe the fear and intense emotions come from lack of knowledge--from old stereotypes and prejudices against those who are different, or less than perfect, according to society's standards of beauty, intelligence, or ability.

I've been wondering a lot about something this past week: what if a friend of mine--someone who's seen me go through this transformation from grief to unsteady acceptance to joy--were to receive a prenatal diagnosis of Down syndrome for a baby she was carrying? How would she react? Have I been clear enough in expressing my love for Colin that she could actually look forward to joining me in the ranks of Ds mommies? Could she be excited like I think she should be, instead of scared or angry? Could her observation of my journey with Colin possibly... I don't know.... maybe even help her reconsider the desperate thought that life would be better for everyone involved if such a baby were aborted? What if I haven't said or done enough for her to feel peace instead of fear or apprehension? Here's what I'd want to make sure my friend knew in this hypothetical scenario:

1) You don't have to be anything special to parent a child with Down syndrome. I know it looks from the outside like these moms are saintly--they have extra patience, extra love, extra energy, right? But now I want you to focus on me. Who's the one who totally lost it this morning when the kids were running 10 minutes late for school for the 415th time and the kid who was supposed to be finding her dang boots was standing in the entryway, drawing in the dust on the mirror? Whose neck veins were bulging? That's right--it was me. You can ask anyone in my family how organized and put-together and patient and long-suffering and soft-spoken I am. They will laugh you to scorn, and that will help you see that if I can do it and love it, you sure as heck can, too.

There are for sure people who have kids with special needs who fight it and resent it and are angry about it every step of the way, and who spend the rest of their lives feeling bitter and victimized. But please bear in mind that special parents are most often MADE, not born. You can become just as amazing as you allow yourself to be. Of course, there are those people who are incredible from the beginning, and who choose a child with special needs through adoption. They are awesome, and I am not one of them. You don't need to be, either. I'm one of the parents who's hopefully becoming the kind of person I want to be. This journey with Colin is teaching me to stretch and grow beyond shallow judgments. I'm learning to look beyond the "different" appearance, the slower or more awkward gait or speech, to really see a person for who they are instead of feeling discomfort or pity.

2) Your life won't be all that different when you have a kid with Down syndrome. It's a bigger adjustment to add another kid to your family than it is to add Down syndrome to your family. Of course, just as with any other kid, there will be lots of great times, and then a whole bunch of other times where you want to run away to Tahiti or something, and never go home to those hoodlums. Parenting is HARD. Period. If you want easy, look somewhere else. Maybe get a plant in one of those self-watering pots.

3) You can still dream big dreams for your kid. Down syndrome won't stand in the way of dreams. Colin most likely won't ever be a hotshot investment banker or brain surgeon or physics professor. That was a hard shift to for me to make in the dreams I had for his future. But I've come to understand that his worth as a human isn't measured by the size of his future paycheck or the prestige of his job. What does matter is that he has people who love and support him, that he's involved in things that help him feel valued and important, and that he has a positive impact on the lives of the people he interacts with.

I fully intend for Colin to grow up and not want to live with me anymore at some point. I want him to learn how to take care of himself, maybe get a driver's license or go to college. Definitely he needs to develop some cool talents. He can work at the grocery store bagging groceries if he wants to, or he could do any number of other things. I still worry sometimes that he'll have too many obstacles in his way--maybe he won't excel at anything. Maybe his IQ or his verbal ability or his interpersonal skills will never be more than marginal. Does that make you sad to think about? Let me assure you, that's something that made me cry bitter tears when I thought about it not too long ago. I'm not as much of a mess anymore when I think about it these days. I still wonder on occasion. Mostly I'm learning to take each day as it comes instead of worrying about a future I can't really control. But let me tell you this--I also worry that my other kids with their 46 chromosomes will grow up to be massive jerks, or mass murderers (one kid in particular...), or any type of good-for-nothing delinquent. The odds of Colin becoming any of those things are really, really slim--possibly even non-existent. It's like my wise brother once said, "The great part about Colin's Down syndrome is that you're pretty much guaranteed he won't grow up to be an a-hole." Most kids don't come with that kind of guarantee.
The most encouraging thing to me when I'm nervously contemplating Colin's future is what parents of adults with Ds share about their kids. They'll tell me that life with their kids hasn't been easy or perfect, but that they wouldn't trade the experience for anything in the world. Doctors and other professionals might tell you your baby's future is bleak and ugly, but what do they know? Don't believe them for a second--they don't have a clue what they're talking about. They're basing those opinions on antiquated information they read from an outdated book. Believe the parents who are living it and loving it.

4) You will think your kid with Down syndrome is the most beautiful, most amazing human ever to have graced the earth with his presence. You might spend a lot of time contemplating how much Down syndrome you can see in your kid, unless you're not nuts like I am. Mostly, you'll realize it doesn't matter too much. You'll kiss his fingers and nuzzle his sweet little neck and marvel at his soft skin. And you'll laugh so hard at his giggles and goofy faces your sides will ache. You will feel more intense love for this little person that you created than you ever thought was possible. You'll miss him terribly when he naps, and thrill when he wakes up, because it means you can hold him again. You'll have to fight your other kids for a turn to snuggle him. You will spend a good portion of each day wondering how you ever got so lucky as to deserve a kid as wonderful and miraculous as him. I promise you--your life isn't ending with a Down syndrome diagnosis. You're being introduced to a life that is more beautiful and full than you ever would have believed existed on this earth. You probably won't ever be able to stop posting pictures like this:

And gushing about him to anyone who will listen for more than 2 minutes.