The Silent Son. Ken Atkins
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, but you could determine if you want to continue with the pregnancy or not,” he calmly replied.
I remember being shocked and sickened at the thought of aborting this unborn human, my beloved child. I couldn’t imagine making such a decision, but then, at that time I was totally ignorant of the severity of some types of handicaps. To be honest, I can’t say what I would choose if I knew my unborn child would face a life of extreme physical hardships, operations, repeated long-term hospital stays, unquenchable pain or unseen and untreatable emotional demons.
I would like to say that as a devout Christian and believer in the sanctity of life I would always choose to honor God’s gift. I can say that I have never, ever for a second regretted the decision to not even go down that road; that Danny’s issues and challenges are nothing compared to the blessing he has been to me and to all who have encountered him.
But I would never presume to judge the choices others have made in the face of bringing a child into a lifetime of pain and perpetual treatment.
If I have learned anything about being a parent of a special child, it is that one of the greatest challenges is the reality of being “God” when it comes to your child’s life. You make all the decisions, you call all the shots, you lose all the sleep worrying if you are doing it right. And there is no quick and easy reference to flip to for direction. You can Google a million ideas, resources, opinions, experiences—but at some point, the choice is yours and yours alone (emphasis on alone).
That really sucks sometimes. No, that really sucks most of the time.
One of the common complaints we heard a lot from parents (and experienced ourselves to a certain extent) is the plague known as “mother’s intuitionitis.” It goes this way. A new mother spends all her time and energy doting on and caring for her beautiful new baby. Naturally, she is hyper-aware of every minute change (or lack thereof), which she brings to the attention of her overworked and overbooked pediatrician at every appointment. “Oh, you are just being a new mother,” is the often-condescending reply. “Your child is just a late bloomer. Every child develops at a different pace. Don’t worry about it; your stress is more a threat to your child than any physical or mental issue at this young age.”
And so it goes for the first two, three sometimes five or six critical years. Then, at some point, maybe even as the child struggles to keep up or adapt to preschool or kindergarten, more testing reveals that mom’s intuition was right all along. There is something physically, mentally, emotionally or chemically wrong. Unfortunately, precious developmental time has passed, and the options are much more limited now than they would have been if the problem had been addressed during those critical first three years of a child’s life.
Perhaps the cruelest words a mom can hear is “If we had only caught this earlier…”
With Danny, we experienced that with our first pediatrician, but dispensed with him quickly (after the six-month checkup). Our next pediatrician was a very sweet lady who had been a nurse when she gave birth to a physically handicapped child. Her frustration with finding a doctor who would take her child’s issues seriously led her to go back to school and become a pediatrician.
This is one of those critical issues faced by parents of special children. Choosing a good doctor is vital to your sanity as you navigate these uncharted waters for your family. Surrounding yourself with a good support team of doctors, therapists, family and friends can make the difference in determining how productive and peaceful every other facet of your life is.
Because here is another reality that you need to accept—there WILL be times when you are going to screw this up. You are going to make bad decisions, you are going to choose selfishly, you are going to listen to the wrong advice, you are going to mail it in, you are going to miss the obvious.
If you have the right team around you, they will respect your decisions and support you no matter what. But they also are going to raise red flags, give you another point of view, ask the hard questions, remind you of