A Lot of Living

Today, for the first time, a stranger approached us and asked if Eli has Down syndrome. I smiled and answered her with an enthusiastic “yep,” to which she replied, “He’s perfect.” {{melt}}

Then, while I was changing his diaper, a woman took a keen interest. I assumed she wanted to ask me about his colostomy bag, but she didn’t. She might have wanted to, but she asked instead about his age, his name–the things that make him human, the things that emphasize his personhood over his diagnosis. She had a kind soul, this woman. I could feel it in her eyes. We all put out vibes, you know. I’m a big believer in that, no matter how crazy it makes me sound. Just think about it–we all know that feeling when a person comes around and our skin crawls. Bad vibes. But then there are the ones we’re drawn to and we just can’t quite figure it out. They make us feel peaceful. Good vibes. She had the good vibes.

Anyway, her granddaughter (well, I inferred it was her granddaughter, but I don’t really know) started watching, and it was obvious that his colostomy bag caught her eye. As pre-teens will do, she inquired, very matter-of-factly, about that “thing” on him. This never bothers me. I enjoy a sense of pride when explaining the hows and whys of Eli’s colostomy bag. And people have been kind; they’ve been interested, not disgusted. This young girl hung on my every word, fascinated by Eli, his condition, and his prognosis. She and her (presumed) grandmother then engaged in their own conversation, and I became a bystander for a moment. “It’s amazing what modern medicine can do,” they concluded.

Upon learning that he was born on Christmas, they insisted that he is a miracle. I agree–he is. I made no mention of his DS in this conversation, but maybe they picked up on it too. Part of me really wanted to blurt it out–and sometimes I do–because I love to see how people process that this baby they’ve just fawned over has an extra chromosome. I can see in their faces how their perceptions are jarred, and it’s a beautiful thing when they equate Down syndrome with all of the wonderful attributes they just bestowed upon my son. It’s like this tiny baby has the powerful ability to shatter stereotypes and challenge notions of Down syndrome. I like to believe that the next time they see someone with Down syndrome, they see that person differently–as a whole person and not a diagnosis. (What lofty dreams this mama has!)

And so, ironically, that was precisely the reason I made no mention of his Down syndrome–because one of the best pieces of advice I ever got was not to make it all about Down syndrome. Let it be a diagnosis, but only a diagnosis. Do not let it define my son. Do not let it take away from the fact that above all, he is a person first. Because Down syndrome doesn’t change the fact that he has feelings. That he loves and sometimes hurts. That someday he will have hopes and dreams. Down syndrome doesn’t change any of that any more than a diagnosis of anything else–strips a person of his humanity. Are there challenges and risks? Of course. But there are for any of us. And, as I read somewhere else once (although I don’t remember exactly where), between the beginning and the end, there’s a lot of living to do. (Take that in, will ya? For all of us, there’s a lot of living to do.)

And we did some of that today at Kings Island with our little family and some friends. It was a beautiful day–the weather was perfect, my daughter laughed and played herself into exhaustion, and my son absolutely LOVED the lazy river and the wave pool in the water park. We definitely got some disbelieving looks because of our tiny little guy with his seemingly giant infant life vest. But his giggles were worth every stare! And I know for certain they weren’t staring because of Down syndrome. They were staring because he looked like a red marshmallow with a hat. And it was damn cute. πŸ™‚

And as the woman and her granddaughter left, they showered us with more kind words. They talked with Evie as they packed up about how special she and her little brother are, they reminded her to take good care of him, and they wished us well with our little miracle.

I am brimming with gratitude. I have a fantastic little family, and I continue to meet people who reaffirm my faith in both God and the goodness of His people. I have a happy heart and life. is. good.

A few snapshots of my little ones, my heart and soul. I don’t have any pictures from today until my husband shares his with me–my stinkin’ camera was full. But these should convey why my heart is so full that sometimes I think it could burst. πŸ™‚

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This picture is not my handiwork. Many thanks to our new friend, Shelly, for taking this adorable photo!

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5 thoughts on “A Lot of Living

  1. You are a beautiful writer and you truly move people’s hearts with your words. I cannot wait to meet him and see you both soon. Keeping you and your family in our prayers.

  2. Funny how sometimes people react on totally opposite poles. When my Noah was first diagnosed at 6 months of age with Down syndrome, as soon as people would start to fawn over him, I would tell them that he had Down syndrome. It was like I figured if they were going to react badly or reject him, I wanted to get it out of the way up front. I guess I wasn’t in advocate mode YET. Now that he is 5, usually people pay attention to him because they see the Down syndrome, and the more they look at him, the more he makes them smile. I wouldn’t change him for the world. When he was first diagnosed, I was not ready to hear how blessed we were to have a child with Down syndrome. It sounds like you have a really good head on your shoulders and you’ve come out of the gate running. And I can tell you, it only gets better.

    Blessings,
    Alyson

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