A tough road ahead

Jackson has a rare genetic condition called Williams syndrome (WS). He also has aortic stenosis and underwent heart survey when he was only 3 months old. Although cardiovascular disease is common among people with WS, it just doesn't seem like a kid should have a cardiologist. But Jackson does, and every year he gets a checkup. So far, everything's been fine.

Now that he's older, Jackson got his first full-body scan last Tuesday. On Wednesday, we got the news that his aortic stenosis is back in a big way. He has a blockage 3cm long that's constricting the opening to the size of a ballpoint pen tip. It's life threatening.

We're waiting to hear from the surgeon exactly what type of surgery is needed and exactly when "as soon as possible" is. In the meantime, it's essential that Jackson stay inactive, calm, and away from people with the swine flu. To do otherwise could be fatal. It's as if my grandson has a ticking time bomb strapped to his chest.

The doctor said that Jackson has undoubtedly been experiencing pain in his legs and stomach because of the location and severity of the blockage. We had no idea. I incorrectly attributed his aversion to walking or exercise of any kind to his weight or to laziness (not something a perfect nana would do). When he stopped to sit on every park bench at the zoo last year—and there's a bench after every two animal cages—I wouldn't let Jackson sit for long and encouraged him to keep walking. And to think my precious boy was probably hurting even then . . . (the photo is from one of his many "bench sits" that day).

With good intentions, Robert and I, along with Zach and Kelly, contributed money for a Nintendo Wii and a Wii Fit game for Jackson's birthday in June. The family thought that having a fun way to exercise would be good for his heart and overall health.

Three days after starting his exercise program, Jackson broke his arm. It was a bad break at the top part of his arm, but since he couldn't handle having a cast put on it, he was just given a sling and some pain pills. Jackson lay on the couch in a lot of pain for a couple of weeks and remained inactive the following weeks while his arm healed. Afterward, the doctor advised that Jackson not do any strenuous activity for a while to prevent rebreaking his arm.

It really hurt to see Jackson in that kind of pain. And it was difficult on Angy and Darrell taking care of their 150-lb kid who refused to move while also caring for Jackson's newborn sister, Sara, and little brother, Christian. But as Angy told me the other day, that broken arm probably saved Jackson's life. We didn't know he needed to be still, but God did.

In everything give thanks; for this is God's will for you in Christ Jesus. (1 Thessalonians 5:18)

When Jackson had that first heart surgery at the tender age of 3 months, the surgeon made the incision along his tiny shoulder blade. As Jackson has grown, the scar has too—a beautiful reminder of his first major ordeal that God graciously brought him through.

It's time now for all of us who love Jackson to "be still and know that God is God" (Psalm 46:10, KJV). We're praying and waiting to see what He will do.