March 10, 2012

3:21 Day 10

I've been thinking off and on all day about what I'm going to write, what I want you to know about Down Syndrome today. I've been on this journey now for 7 months. I am so far from being an expert on this condition that it can completely overwhelm me if I think about it too much. I've been relying heavily on my local DS association, the NDSS, and blogs of parents who've been down this road for information. In all my reading and conversations, the one that keeps coming up is this: You have no idea what your child is going to be capable of. Physically, mentally, socially. You have no idea what their life is going to be like.

But really, isn't that the truth for any child?

When my first born, Luke, was a tiny baby, I remember holding him and wondering what he was going to be like. I had no idea. Not about his personality, or his strength, or his intelligence, or his physicality. All I knew for certain was that he could cry and he could poop. Those were my only I-know-this-for-certain facts about Luke. And slowly, the last 2 and a half years have started to reveal who Luke is. He is smart and can undo any child lock known to man, but is delayed in speech. That he is strong and solid and runs with abandon. That he loves being around people and would personally greet every single person in Target if I would stop pushing the cart long enough to let him.

When I looked at Samuel, my beautiful baby boy, those first few months, it was so hard to not see the Down Syndrome first, and Samuel second. All I could focus on was his little gaped toes. His slanted eyes. His folded over ears. The thicker neck folds. The little line that ran across his hand. The doctors who were so concerned about his tiny heart.

But I'm getting to know Sam now. My sweet, smiley baby. He's ticklish under his ribs, but only if you tickle him with your nose. He loves when you lean in and kiss his cheeks over and over. It makes him giggle. He is fascinated by his big brother and will follow him around the room with his eyes, even if it means leaning over backwards to track him. He hates being on his stomach and now that he's learned to roll over, it's almost impossible to keep him there for any length time. He likes to rock himself by pushing off your lap with his legs. He has discovered his toes and can get both feet in his mouth at the same time. He's a talker, loving to screech and babble and play with his lips.

Children with Down Syndrome are going to have certain physical markers that show they are different. They are going to have mental limitations. They are going to have to work harder to move. But there are ranges for each of those things. And none of them are connected. So, you can have a child that carries all very distinct physical characteristics of Down Syndrome, but be very high functioning. Or you can have a child that has soft signs of Down Syndrome, but isn't as high functioning. They can have varying degrees of low muscle tone which can affect so many different things: from digestion to sitting, from eating to walking. They might have any combination of hearing or vision or digestive or cardiac issues. Or they might not have any at all.

There is no way to know what your child with Down Syndrome is going to be capable of.

There is no way to know what your child is going to be capable of.

All we can do is love them. Support them. Challenge them. Give them everything we can to help them reach that potential. And then we just have to sit back and watch. Let them be who they are going to be. It's the same for my child who has two 21st chromosomes as it is for the one who has three.

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