Tuesday, November 3, 2009

The Immensity of Down Syndrome

Sometimes the weight of having this little boy, this Charlie-boy, in my life rests heavy on my heart.

I have to say most days we go about doing our little family thing in our little family way, and I don't give much thought to Down Syndrome. Charlie is Charlie, just like Calvin is Calvin, Ray is Ray, and Kim is Kim. We all have our unique personalities, strengths, weaknesses which may or may not have to do with our respective number of chromosomes.

Most days, when I do think about Down Syndrome my thoughts lead me to a stunned realization. I look over at Ray and say, "Ray, we have a son with Down Syndrome!" It still seems so uncanny.

But there are times when the shear meaning of Down Syndrome makes me pause, and fills me with fear and trembling, in the reverent sort of way.


Oh man, I don't know if I can articulate this well at all.

Maybe it is the school thing and looking at the big picture of his life, which I just don't do as much for Calvin, and feeling like it is up to me, to an extent, to map out a path for Charlie. Like, I need to pave the road for him and hope I end up in a place where he will feel confident and prepared to take over when he is ready.

It is the thought that Charlie has something that we don't all have. In his more simple way of doing things and feeling things and interacting with things, he is a more perfect human than I. Yet I am charged with his care.

It could be the thought that valuing people with disabilities doesn't seem to be a condition inherent to the human heart. Here, we need books filled with law to value our most vulnerable. In some places imperfect babies are left to the elements. In other places, abandoned to the system and ware housed. This scares me about the world, and about sending my boy out into the world. And I struggle to understand what it means.

Maybe it is just the sight of his too-small-to-almost-be-four-years-old body sprawled out on the comforter, and the sound of his raspy breaths as he naps on my bed this afternoon.

He's an incredible human, this Charlie.


I confess there are times when I've pondered the hand of God to create such a boy. I've pondered it in light of things I've heard said, things I seen done. Some people believe it is a tragedy to let such a person live, so they discard the child before he has ever tasted air or seen light. Others believe people like Charlie are sent into the world to give. To give love and light and truth and simplicity. They believe there is no mistake in an extra chromosome. They believe God meant it.

In our home group (Bible Study) this week we started a series that looks at the Biblical narrative as a whole. Of course, we started with Moses' account of creation in the book of Genesis. In the DVD series ("Nothins Going to Stop It!" by Bill Jaxson) we examined God's mandate to Adam and Eve to multiply and fill the earth. He was asking them to fill the earth with bearers of His image.

There is a line of thinking about why God even created the earth. It is an idea pondered by people way more intelligent that I (Jonathan Edwards, C.S. Lewis and others).  I will try to distill it here. The thought is that God has existed in absolute perfection for all of eternity. Because nothing and no one can even hold a candle to the absolute perfection of God, it can only be right that God is completely delighted in himself without being arrogant in any way. To make this very simple, God's plan in creation was to multiply his image (thus He created
human kind in his image and mandating them to multiply and fill the earth) so that His delight would be multiplied and increased. Again, with zero arrogance. It is hard to fathom.

After the fall then, it is apparent that though we multiply and fill the earth, we are multiplying a fractured image of our Creator. An image that is not wholly as God intended. From the moment we are born, our hearts are inclined to falter.

And then there is Charlie.

Imperfect in body and mind, and certainly inclined to fall as surely as his brother or mother or father. But, there is something about him. Something unmistakable. A simpler outlook, a purer motive. He is a gift to my heart, and indeed I learn much from him. I learn something of, well, a joyful-humility. A humility that is not embarrassed to be humble or meek, but delights in such a position. Charlie is completely delighted in himself, without any arrogance. Even in his meekness. What does it mean?


I learn other things from this boy. I learn to receive others into my life with a gentle gratitude. To accept the help of a stranger, the hug of a friend. I learn to rest. To take it slow when I need to. And, I learn to accept people, though I struggle at it. Plain and simple.

Raising Charlie... It is immense. It is sacred. And I hope...

I hope this blog extends a view of the practical, the spiritual, and the daily of raising a child with special, or just different, needs. I hope it comforts a new mother or father in their search for "what it all means" when grappling with a child's diagnosis and that feeling of being lost. I hope beyond hope that even one person faced with such immensity will find, as I have, the endless, boundless potential that such a human, imperfect as they may seem, holds for this world, and beyond. And I hope by reading here, you will be lifted up, because you are blessed in this path.

5 comments:

Brandie said...

This is a beautiful post!

Elizabeth said...

Kim, your words inspire me. Thanks for sharing!!! I'm blessed by your friendship and I'm blessed to have little Charlie as our friend, too!

katie said...

Thank you, Kim. Thank you for sharing, thank you for seeing, thank you for loving, thank you for pondering. Charlie is lucky to have you for a mother.

SunflowerMom said...

This is such a beautiful post, Kim! I've been back here a couple times to read & re-read it since you wrote it and am left speechless each time because you said it all. thanks.

Yo Mamma Mamma! said...

This is a wonderful post. To me, it is both the biggest and the smallest thing of imporance in our life as a family. It is very hard to explain that to anyone who isn't living it. It has changed me a lot, and it has changed me very very little. Your post is just beautiful!

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