Wednesday, September 18, 2013


We were in the middle of our big ultrasound for baby #3, and the tech commented, "Awww. I think the baby's sucking its thumb."

While to me most images on an ultrasound screen look like something out of an alien movie, it was hard not to sit there and be awed by that for a moment. Then I had a memory. I recalled the satisfaction Anna had when she was about seven weeks old, finally getting her thumb into her mouth. We were in Maine and my parents were there, and she was the first child/grandchild, so this was indeed a BIG deal.

When Ethan was that age, he couldn't do it. I would watch him struggle. His arms were always flailing. It was like he wanted to get his hand up there, but his body wouldn't go quite where he wanted it to go. Now I know some of the reasons why he was a fussy baby. Thanks to what we now understand is low muscle tone, it was hard to pick his head up off the floor during tummy time. He'd grind his head into the carpet, turning red and crying. And his struggles with "poor motor planning" (more lingo!) made getting the thumb into his mouth harder than for the average baby.

Every once in awhile something like the thumb incident will jog a memory. I'll remember pieces of Ethan's autism puzzle that I picked up on early on. I just didn't know where they fit.

I used to attend a play group. Another mom there had a daughter maybe a week older than Ethan. One day I remember watching the baby gnaw a piece of fruit it one of those mesh feeders, and I knew Ethan would not able to do that. Later on I watched the son of another friend, younger than Ethan, reach into a container and pull out Cheerios one by one to snack on. That seems like such a simple action. Yet I knew Ethan would have trouble, and couldn't understand why. Some of the issues he had were so subtle I didn't know they were a problem until I saw a child his age doing something with ease and realized he couldn't.

When I look at Ethan today, and it sounds cliché, but I'm amazed at how far he's come. If there's any phrase that fits his development to a "t," it would be his ability to use his smarts to compensate for what he doesn't have. This boy who had physical therapy for a year, who still takes OT and supposedly has moderately low muscle tone in his upper body and still has fine motor skills issues...this boy rolled over both ways by five months...crawled at 8 months and walked at 13. This boy tackled the monkey bars before many of his typical friends and is learning to write relatively neat letters and is working on shoe-tying, too. His physical therapist sees him now and can only shake her head, the change has been so striking.

Sometimes I'm amazed at the way our bodies work. It's like the blind person who has an extremely overdeveloped sense of hearing to make up for what's lost. It's like the person with no arms who paints masterpieces with their feet.

Sometimes I have to remember to stunned by who each of us are. There's nothing like participating in the process of growing another human to help remind me of that.

I'll never forget an excerpt from a Phillip Yancey book, Soul Survivor, in which he talks to Dr. Paul Brand, who worked for many years with people with leprosy. Brand had a completely different take than most people's on this crazy, mixed-up world. Pain, to Brand, was a good thing. Absence of pain is what causes people with leprosy to eventually lose limbs and other crucial body parts. And also, to Brand -- the universe was a friendly place.

Yancy writes: How could a good God allow such a blemished world to exist? Brand had responded to my complaints one by one. Disease? Did I know that of the 24,000 species of bacteria, all but a few hundred are healthful, not harmful? Plants could not produce oxygen, nor could animals digest food without the assistance of bacteria. Indeed, bacteria constitute half of all living mater. Most agents of disease, he explained, vary from these necessary organisms in only slight mutations.

What about birth defects? He launched into a description of the complex biochemistry involved in producing one healthy child. The great wonder is not that birth defects occur but that millions more do not. Could a mistake-proof world have been created so that the human genome with its billions of variables would never err in transmission? No scientist could envision such an error-free system in our world of fixed physical laws...

Like a tour guide at an art museum, he excitedly described the beautiful way torn muscle filaments reconnect, "like the teeth of interlocking combs," after an injury"... [he said] after operating on thousands of hands, I must agree with Isaac Newton: In the absence of any other proof, the thumb alone would convince me of God's existence.

There are times it's easy to look at people with special needs and see their deficits; to look in the mirror and see nothing but imperfection. And then there are the moments you realize there is so much more that you're seeing.

No one will ever convince me that we are random acts of the universe. Flaws and all, each and every one of us: we are miracles.

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