The Silent Son. Ken Atkins
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 a sales job at a furniture store, the beginning of an entirely new career path. We were still unpacking, trying to bring our monstrous old home with so many problems under control, and looking for local therapists and doctors for Danny.
Looking back on this tumultuous period with the advantage of twenty-five years of hindsight, it is amazing to see how foolish two intelligent adults can be, even with the best of intentions. But it is equally amazing to see how God can bless us during our follies. Even though we had relocated to a tiny, rural community, we had moved to one that already had two other Angelman Syndrome youths in the county. In fact, they were being treated by the pediatrician we found. The pediatrician was from India, where alternative medicine is accepted and promoted (which would make a huge impact on our lives, especially Danny’s, in the years to come).
We found a wonderful, forward thinking, aggressive physical therapist who became a part of our family, teaching Danny how to walk (at least in the swimming pool), guiding my wife in her quest to find the best resources for Danny’s ongoing development, and encouraging us to never give up or give in to the pessimism and easy answers we often got from other medical professionals.
In the midst of all the confusion, stress, financial worries, social adjustments and sheer exhaustion, we began to slowly take our eyes off the ball. We weren’t doing the program anymore. We didn’t have our support system anymore. We weren’t seeing any great advances in Danny anymore. The hard reality was we didn’t have a smooth, familiar routine around which we could fit family, friends and marriage anymore.
In many ways, the beginning of the end had come, but we were too busy to even notice. Prior to our move, we had a home-based marketing business, which meant I could be home every day to help with Danny’s program and entertain Chrissy. More importantly, I could keep a close eye on my wife’s struggles, encouraging her, relieving her when the program became too physically and emotionally exhausting, reminding her of the amazing good work she was doing when the results didn’t come as quickly or as significantly as we had hoped.
Now I was gone for a huge part of every day, and I brought home a whole new set of worries and frustrations from my job. It stopped being about us. Now, little by little, day by day, my world became less about family and more about me.
In short, I traded my role as husband and father for one as breadwinner and weekend reliever. At the time, we both could and would give lots of reasons why this was a good trade. In fact, we could give you a few thousand reasons every month.
As summer turned to fall, I found myself in a job I truly hated, working on a house that had a never-ending list of things to fix, seeking that perfect balance that would enable us to get back to the plan we had perfected in Texas.
Our Texas house finally sold, and I was able to quit that hated job. But within a few months, we realized that the “new” old house would take any and all monies we were able to scrape together. Christmas that year was not a particularly happy one. We were still trying to do the program, but life kept getting in the way. Besides, Danny was still crawling, and he had found a great new activity swinging wildly in a small hammock on our side porch, getting lots of tactile stimulation and deep breathing exercises (from laughing maniacally as he twisted and turned in the swing for hours on end).
My wife began doing research into cell replacement therapy. She found a therapist in Atlanta who had a program that was very similar to the Institutes’ program, only more family friendly. He was tied in with a doctor from England (at least he said he was a doctor) who had been having great success worldwide by injecting