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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 the thing you have chosen to forget, encourage you to take a few deep breaths, sleep on it and not do anything rash.

That is the big mistake we made in choosing to leave our comfort zone in Texas and strike out on this new Fix Danny Adventure on our own. We made the choices we made with the best intentions, giving no quarter to the red flags and doubts raised by many of our closest friends and supporters. We went directly from denying that Danny had any serious long-term problems to denying that we couldn’t fix it. We made our plan and married it for better or worse.

We took comfort in having made a decision, even if there might have been some lingering doubts. But here’s the thing. That cycle of denial, discovery, despair, determination and acceptance isn’t a one-time event. Just because you work through it and make peace with your new reality doesn’t mean reality is satisfied to leave you alone. There are constantly new stresses, issues, challenges and disappointments that make you go back to square one and question everything. What did you miss? Was that decision the right one? What if you misheard God’s answer to your prayers?

Add in a spouse who is going through this battle with you, and the chances for doubt and disagreement increase exponentially. Remember, you bring the knives of your own personality to this gun battle for your child’s future. And your spouse brought his or hers. Some couples, the lucky and smart ones, use these cycles as opportunities to reevaluate their differences and strengthen their commonalities. They are honest enough about their own fears and inadequacies to allow their partners to stand in the gaps when they can’t rely on their own intuitions and good intentions.

Like I said, those are the lucky and the smart ones. For the rest of us, these disruptions to our lives and our dreams often lead to resentment, discouragement, anger, distrust, self-pity and blaming. Our child’s weaknesses and inabilities point out our own emotional infirmities. We can’t blame the child for being the way he is, we don’t want to blame God for making him that way, but we are hurt and angry and we just need to vent, either outwardly or inside our broken hearts and confused minds.

So we fight. And pout. And keep count of our spouse’s faults and failures that keep popping up in every argument, discussion and decision. Eventually, we just go to our own corners and try to make the best of what we see is a very bad situation. In our case, since I was working and traveling, the decisions for Danny’s day-to-day care fell to his mom. Besides, being the people pleaser and codependent personality that I am, it was easier to just accept the fact that she was right and I was wrong, and to just do what I could to support her and keep the peace.

We approached Danny’s third birthday in a drafty 4,000-square-foot money pit, hundreds of miles between our support team back in Texas and our demanding new treatment partner in Philadelphia. I was on the road four or five days a week in my new sales management career, leaving my wife to oversee the work on our house, the ongoing therapy for Danny and the care of two-year-old Chrissy.

“This is just a temporary setback,” we kept telling ourselves. “Once we get the downstairs renovated, and we catch up on some of these bills, we can focus more on Danny again. It’s just a matter of time.”

We were optimistic and excited about our new plan, even if the Institutes weren’t at all happy about it. We weren’t particularly happy with them, either, but believed that could be worked out once we got through this tough spot.

For Danny’s part, he was just his usual good-natured, happy self. That’s the thing about Angelman Syndrome. There are almost no physical issues, so there aren’t a lot of medical crises or ongoing therapies required. There are no operations or long-term stays in the hospital. There are no feeding tubes or breathing treatments to deal with. At three, Danny wasn’t really that far behind in his development, which was stuck at about eighteen months. We still had time, we figured. We just needed to get things a bit more organized and less hectic.

We weren’t doing any of the program anymore, but he was getting physical therapy and he was highly stimulated in the swing on our side porch, and with all the freedom he found on our huge back deck and yard. He was very adept at crawling and fearless in his explorations. If he heard the neighbors across the street or the neighbor kids in the front yard or just a noisy bird in one of the giant oak trees that encircled our property, he would take off crawling as fast as he could go, right off the edge of the porch and into the flower bed two feet below.

The move may have left my wife and me struggling financially and doubting our decisions, and it may have caused our two-year-old daughter some anxiety as she had to adapt to a whole new environment and schedule, but Danny couldn’t have been happier. He had lots of new places to roam, lots of new things to get into and a lot fewer demands put on him by adults who were always trying to put a mask over his mouth and nose, make him crawl when and where they wanted, or take control of his arms and legs as he lay helplessly on his back.

And home life wasn’t totally bad. We did have a great old house with hardwood floors, high ceilings and amazing decks. Even though I was gone most of the week, the weekends were filled with raking leaves and playing in the piles or going to the beautiful state park and playing in the cold, clear creek or just cooking out with family. There may have been an ever-present undercurrent of worry and stress, but there was laughter and love.

We settled into the determination and acceptance phases of our journey with Danny. The past three years had tested our faith and our marriage mightily, but throughout it all we felt like we could always count on each other and on God. Admittedly, there were days when each of us had doubts and concerns about the other, but we had made it through a lot so far with no more damage than what we saw in other couples around us.

Besides, Danny and his sister were counting on us. This may not have been the life either one of us would have chosen, but it was the life we were given. For me, this was just a continuation of the life I had lived as a child on a farm with cows and crops that had to be cared for, regardless of how you were feeling that day. It is, as they say, what it is.

Or at least it was for a little while. And then it all took a new, and much scarier, turn for the worse.

Seizures.