Tuesday, June 17, 2014

Isaac Hui

Psalm 139:15
Wonderful are your works; my soul knows it very well. My frame was not hidden from you when I was being made in secret, intricately woven in the depths of the earth.

We recently celebrated Isaac's 7th birthday. Breakfast in bed, presents, root beer floats with grandparents all made it a special day for him. Birthdays are always a time of reflection. So I   thought I would record some of my thoughts about him at this time, especially from a medical standpoint.

When Isaac came home to us from Henan, China just over two years ago, there were more questions than answers about his medical history and status. Many questions still remain unanswered, but in the daily rhythm of our lives, the questions are less important than the joy of parenting this unique child.
Isaac's funny gait (picture a speed walker), frequent falls, struggle with stairs and crooked smile all seem like such a part of him that is hard to picture him any other way. They are as much a part of him as his engineer-mind, his attention to detail, or his laugh.

When we go to the Children's hospital and see the team of specialists they shake their heads because they just can't figure our boy out.  With each visit there are more medical students in our room and more doctors talking together about his unique characteristics.

We have done several genetic tests. Yet each one has been negative. He has seen a doctor and his team from the National Institute of Health. This man's specialty is rare genetic muscle diseases. Now, our little guy's blood is being studied by a group of researchers. Will they ever have an identified gene or a name for his asymmetrical muscle weakness, his high palette, his weak neck?  Does it matter?

This is all made more complicated, or course, because we have no family genetic history to give clues. The one thing they have said is that he appears to have a myopathy rather a dystrophy. In other words, his muscle tone will probably not deteriorate, nor will it improve.

How do you explain this to a smart little seven year old? What does he tell his friends when they wonder why he can't run with them? What is reasonable to expect from him at home in terms of chores and self-care? How do we challenge him to do all that he can but also be reasonable in our expectations?

He has come so far since he joined our family. When we first came home together from China, he would stay in the same spot for hours. Now he is all over the house. He loves to race around the driveway on his little tricycle. He can walk quite a long way before he needs a break. He has gained some height and some weight, though he is still a tiny, skinny little peanut. His language is truly amazing to everyone. He has a very bright mind.

I am reminded as I watch him that we live in a fallen world where sin has impacted everything. At the same time, I am daily reminded of grace. The grace of Christ in our lives shines forth from those little eyes (one more open than the other). He has a family. We belong together. We will make as many trips to Denver to the Children's Hospital as we need to. We can use our handicapped tag and stroller and put bandaids on skinned knees. And the rest of the time...most of the time...we will just enjoy each other and the life that we share. As he learns more about Jesus and his special design for his body, we trust that we will have the wisdom to handle the other questions and challenges.

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