The Silent Son. Ken Atkins

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СКАЧАТЬ 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 cells from sheep into humans. It was illegal to sell these sheep cells (say that five times fast) in the United States, but they could be purchased in Europe and shipped into the country. We met with the therapist and got a new program. We met with the English doctor and made plans to order some cells.

      Our already suffering bank account took another blow. By January, we were desperately low on funds and there was a lot to be done on our house, especially with the cold winter upon us. I found a new job that was better than the previous one, but it required me to travel out of town for days on end every week. Still, I rationalized, this was good for my family. If I was able to make enough money, Danny and his sister would have their mom at home full time, and she really was the best one to manage his program and raise my daughter.

      Another chink had been lodged in our family wall. Our goal was still the same—to fix Danny. The life we had found in Georgia wasn’t all we had hoped it would be. In truth, it had been a pretty big disappointment for all of us and a step back for Danny’s program. But we were determined. We would make this work, no matter what. We would adjust and be more diligent.

      Adjusting is something parents of handicapped kids find themselves doing a lot. We find new doctors and new friends, as well as new ways of coping with our handicapped child, our normal child and our own brokenness. We become experts at making wrong decisions with the right intentions. We sacrifice our own sanity, finances and future in the hopes of meeting the special needs of our child. We learn to accept our child’s disabilities, but deep down we still fight and pray that one day he will be different—that is, not so different from all the other kids.

      We tell ourselves that God has chosen us to care for this special child, and that it is our Christian duty to do everything we can, to give everything we have, to make this right. We weep and call out to God for His strength and His guidance, but we lose sight of the bigger picture. Jesus’ final commandment to his disciples was to love one another as He loved us—totally, without condemnation, without regard to our abilities or potential.

      We were fighting the good fight, but we had lost sight of the battleground. It was all about fixing Danny. That was, we honestly believed, our God-ordained path. But in our obsession with helping Danny develop the skills that would help him live a quality life, we overlooked the most important responsibility and challenge for our whole family—to love him, and each other, unconditionally and intentionally.

      Chapter 4

      RIDING THE CRISIS COASTER

      “Blessed are the poor in spirit, for theirs is the kingdom of God.”

      – Matthew 5:3

      Like most personal crises and tragedies, discovering you have a handicapped child sends you through a series of stages: denial, discovery, despair, determination and, finally, acceptance. It all starts with denial. “Not my child” is the natural first reflex.

      In many cases, the deformities are too obvious to ignore. More often, the issues are less clear and subject to debate by doctors, therapists, well-meaning family members and friends, your pastor, radio talk-show hosts, best-selling authors, and the lady behind you in the Express Lane at Walmart when you are just trying to get some diapers and get home at the end of a long, tiring day with an out-of-control kid.

      Sometimes the evidence is there prenatally, leaving the parents with the horrible choice to abort the pregnancy or go forth with a painfully uncertain future.

      When we first learned my wife was pregnant with Danny, we discussed several tests that the ob-gyn wanted to perform to determine the health of the baby. One of those was amniocentesis, a common but somewhat dangerous test used to detect potential genetic defects and other issues, which were of particular concern since my wife was beyond thirty-five years of age at the time.

      “If you find something, would you be able to treat it?” I asked.

      “No, СКАЧАТЬ