The Silent Son. Ken Atkins

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      “Many are the plans in a man’s heart, but it is the Lord’s purpose that prevails.”

      – Proverbs 19:21

      In the handicapped world, even the smallest advances are occasions for great celebration. With Danny making such amazing progress in his crawling, our families and friends began to catch the dream we had been casting ever since we had returned from Philadelphia. There was hope to fix Danny. He would walk someday. And even if he never talked, he would learn to communicate.

      That was the mindset of everyone around us as we approached Danny’s second birthday. The goal of crawling a mile a day had been met at a pace that stunned even his mother and me. We couldn’t wait to return to the Institutes to get our next plan, to move on to the next stage. In fact, this thing was working so well, we decided to double down, to pull up stakes and move as close to Philadelphia as we could so that we could devote even more time and energy to this amazing program.

      Our elated calls to the Institutes, though, were met with a disturbingly mild response and an admonition to not worry about the next step—just keep doing what you are doing. We couldn’t put our fingers on it at the time, and we refused to focus too much on the negative vibes we sometimes got from the Institutes’ staff, but something definitely didn’t seem right. The other reality we didn’t discuss, but couldn’t miss, was the fatigue setting in with our team. They were still as sweet as ever about helping. They were faithful in showing up and fulfilling their duties. But you could see it in their faces. They had children and lives of their own, and they were spending a lot of time focused on our son instead. Of course, no one ever complained, but we were all looking for some relief.

      And there was also the Chrissy issue that needed addressing. Our seven-month-old daughter spent most of her time in a playpen or in her car seat, parked next to the patterning table or in the adjoining room where she could receive attention during boring times of Danny’s program. But she was becoming less patient with the leftover crumbs of time and energy we threw her way, and often demanded to be taken out of whatever device she was confined to and played with.

      I think it was about that time that someone told us about the movie, Lorenzo’s Oil. In the movie, Nick Nolte and Susan Sarandon portray a real-life couple whose son develops an extremely rare medical condition that threatens to take his life and doom him to incredible pain and misery in the process. The doctors offer little hope, so they decide to fight the battle on their own. The late Roger Ebert captured the movie, and the reality of many parents of handicapped children, in his glowing review posted on rogerebert.com:

      “(Nolte and Sarandon) play a married couple sometimes too exhausted and obsessed to even be nice to one another. But they have a common goal. They want to save their son’s life.”

      While Danny’s condition wasn’t life threatening, it was quality-of-life threatening—at least in our minds. We just knew there had to be an answer that would enable him to walk and talk and be just as normal as his little sister. It was our task to find that answer, and nothing was more important.

      Even though we had concerns about the Institutes, it still offered the only hope we had found. In our enthusiasm and dedication, we determined that we would be the ones to take the Institutes’ great work to the next level, to prove to the world that the program would work. And we would have a fixed Danny to show for it.

      Thus began the quest to find the best place to raise our kids and pursue this worthy dream. It had to be someplace closer to Philadelphia than Texas, as we would need to be making trips to the Institutes at least twice a year. Plus, there were great research facilities on the East Coast, and the Angelman Foundation was based in Florida.

      After looking at some opportunities in upstate New York and rural eastern Ohio, we decided that the best course would be in the mountains north of Atlanta where Danny’s mom had relatives. It was only a twelve-hour drive from our family and friends in Texas; and it was about halfway to Philadelphia. By moving to a small town, we could find housing cheap enough to enable us to not worry so much about making a living and instead focus our energies on Danny.

      Chrissy would benefit, too. At least that was what we assured ourselves and our doubtful life group members. It would be great for everyone. Being in a small town in the beautiful north Georgia mountains was a no-brainer. I think many of our group agreed that this was a no-brainer decision, but not in the way we imagined.

      The move took up weeks of packing and driving and unpacking and more driving. During that time, we were unable to continue the program, which did not please the Institutes at all. They didn’t care about our big dreams and our great plans. They were unimpressed that we were making these huge, long-term life decisions. Just do the program. And come see us in June.

      Physically and financially, there was no way we could make that June appointment, so we rescheduled for later in the summer. We had purchased a large, old and pretty run-down home that needed lots of work just to make it suitable for living. The sale of our Texas home hit a snag, which left us in need of immediate income. That meant I had to find a job—any job—quickly. Our return trip to the Institutes had to be delayed indefinitely, until our finances recovered. Perhaps by spring things would be better, we told the frustrated scheduler in Philadelphia.

      Within a few weeks, I had found СКАЧАТЬ