Disappointment, but a joyful walk

When things are going well, as they usually are, I get comfortable and even complacent. Until Jackson's checkup last Wednesday, it had been quite a while since I prayed specifically about his heart condition. And because his daily blood pressure checks have been remaining normal for him, I expected good news. But after hearing about the results of his checkup, Jackson's health has been foremost on my lips during prayer.

Dr. Petit said that Jackson's aorta may be starting to grow into the stents because the blood pressure in his leg was much lower than in his arm, which could also be causing him leg pain from poor circulation. He increased Jackson's medicine (for the umpteenth time now) and said to start checking his blood pressure on his leg as well as his arm.

If it turns out that the aorta is growing into the stents, Dr. Petit could balloon them again in lieu of open heart surgery, which is made more complicated and dangerous according to the number of stents. Jackson has five.

To refresh your mind or bring you up to speed if you're a new reader of Jackson's Journey, here's a brief recap of the heart journey so far:

• January 2010: Jackson was in the hospital for four days. Surgery the first day was to put two stents in the upper part of his aorta, but one of them moved to a dangerously low position. The next morning, he had surgery again to add a third, larger stent in his upper aorta and move the bottom stent to a safe place (although its location can cause stomach pain).
• April 2010: A checkup revealed that Jackson's blood pressure was still high and that although his aorta was nice and big where the stents are, everywhere else his aorta showed damage from coarctation.
• October 2010: After a few days of dangerously high blood pressure (like 230 over 111, which is stroke territory), Jackson was in the hospital for nine days. One stent was closing up and his heart had gotten bigger from working so hard. He had surgery to balloon the three stents and add two new ones.

Dr. Petit said if everything went well, it would be four or five years before the stents might need ballooning again. I was so hoping for a nice long stretch between hospital stays. With the checkup results this week, however, it looks like it could be much sooner.

Darrell took Jackson to Texas Children's Hospital for the checkup. They had an incredible 3-hour wait to see the doctor. What's even more incredible is that the entire time, Jackson sat patiently in the waiting room, often saying "heart" and then "doctor," perfectly happy to just be hanging out with his dad.

We have no idea how much pain Jackson is in on a regular basis—resulting from heart and circulation problems or from scoliosis—but he's always happy. Except, that is, for those joy-encroaching moments like when his parents tell him he's had enough pizza, or they fuss at Christian or Sara (Jackson has zero tolerance for disharmony), or suggest that he give a Willy Wonka Sploshberry to Christian. (I totally get having two full bags and yet not having a piece to spare.)

Since Jackson began a few months ago pointing to his eyes and saying "Happy," I haven't been around him when he didn't say it often. He must want to keep reassuring us that he's happy, maybe so we'll be happy too. The photographer who took this photo of Jackson posted it on her blog with the caption, "He exudes joy." Indeed he does.

Being around Jackson is a constant reminder that joy isn't dependent on our circumstances, but wholly dependent on our relationship with the Source of true joy. I think Jackson and Jesus must be really close.

"These things I have spoken to you so that My joy may be in you, and that your joy may be made full." (John 15:11)

What things had Jesus spoken? Instructions to His disciples to abide in Him. To remain in Him. To stay in fellowship with Him. To stay close to Him. Why? So that His joy would be in them and their joy would be full.

In His creation of Jackson, God removed some of the barriers that can hinder people from remaining close to Him. With a clearer path than most for walking alongside Christ, it's no wonder that Jackson exudes joy.

In case you haven't noticed my motto posted in the right column, it's that as Christians, we have nothing to fear, no reason to worry, and no right to complain—ever. We can have deep, abiding joy, regardless of our circumstances. I forget that a lot, but Jackson is always there to remind me.