Right off the bat, let’s quickly attribute that quote to George Addair. I’ve found plenty of proof that he said that, but I can’t find anything else about the man. His quote, however, changed my life.
Fifty-two days ago, I placed my sweet, vulnerable, darling Caleb into a residential home. Fear of that act has siphoned my life force for the past decade. But more on that later.
Fear has been a constant companion in my life. As a little girl, I feared the dark and Hamburgler-like robbers who might sneak in during the night.
We would go on to have our apartment broken into and the one car in our family stolen, so those fears grew long, invasive roots like a willow tree. Many storms would come and invade otherwise normal days, sending those roots further into the soil of my psyche.
As an adult, my fears became more esoteric. Fear of failing, fear of success, fear of saying or doing the wrong thing, fear of reacting too strongly. Feminism was rampant by 1985, but it had not yet perched in my soul.
Mostly I feared confrontation. I would simply stop talking to a friend rather than have a conversation. If I received a bad grade for a project, I would write a letter to the teacher. During one history presentation, I videotaped it rather than perform my speech in front of the class—I was afraid of that teacher, who, two years later, would go to prison for attacking a student.
Confrontation, in my mind had two speeds: 1 or 100 MPH. One MPH was complete avoidance, which leads to self-hatred and an awful pit in my stomach. 100 MPH is screaming at the subject, like that out-of-control father in Twisted Sister’s We’re Not Gonna Take It video.
My life would be a series of conflict-avoidance scenarios. I won’t list them here but the most egregious was that I was raped, after two sips of a drink at a fraternity party, in 1987, when I was 17 years old. I am deadly serious when I tell you I didn’t report him for fear of his reputation being sullied. I also knew viscerally that at that point in time, I would be blamed.
Another trespass on my soul was having my college honors thesis denied by a female professor because she claimed it was written with a traditional woman’s point of view. My interpretation of feminism means we support all women in their beliefs, but my university did not share this view and I was denied that honor at graduation.
Three years later, pregnant with my second child, I didn’t feel any fear, certainly nothing like I had felt when I had my daughter Sophie 17 months before. Throughout Caleb’s pregnancy I felt peace and content.
When he was born at midnight and taken by noon from Princeton, NJ to Philadelphia, PA, I still felt no fear. When a cardiologist called the hospital later that night and told me that Caleb seemed to have a condition called DiGeorge Syndrome (now called 22Q Deletion Syndrome), I felt no fear for me, only for that tiny baby who was now so far away from me, awaiting open-heart surgery. I was soaking in worry, but not fear.
Six weeks later, after a grueling recovery for both of us, my little family was transferred from New Jersey to Buffalo, New York. I received a bill from the Children’s Hospital of Philadelphia in the amount of $144,000 for Caleb’s surgery and hospital stay.
I knew I had to call immediately, but I couldn’t let my babies out of my sight for any length of time so I sat at the kitchen table, preparing my confrontation. Raising my voice would frighten Caleb and his 18 month-old sister so I took a few deep breaths. My hands shook a bit as I dialed the hospital.
The woman on the other line verified the bill.
“But we have insurance,” I said calmly.
“Yes,” she said disdainfully, “but you didn’t pre-register your son so it won’t go through insurance.”
“So after missing my baby for four days and leaving against medical advice, you’re telling me that before rushing to see my baby, I was supposed to stop by and register him?”
“That’s exactly what I’m telling you,” she huffed. “It’s procedure. Now, can you pay all at once or—“
“Is this the number you wanted?”
Silence.
“You see, ma’am, the first thing I did when I arrived at your hospital was pre-register my son. We’re done here, right?”
That bill ended up being paid in full. After I hung up, a peace settled about my chest. I had just had my first confrontation without yelling. I was a little drunk with power. If only I had known how many peace-stealing confrontations were headed my way.
Two months later, I called another hospital because I hadn’t received a confirmation call from the MRI department for the next day’s appointment.
“We have no Caleb on the schedule today or on any day. You must have done something wrong.”
My heart raced, my throat completely dried out and tears threatened to shoot straight out of my eyes.
“But… but, there is a hole in the crack of his bottom and they told me it could be a tethered spinal cord, which would need immediate medical attention. You have to see him.”
“I could try to schedule him now, but our next appointment is 8 months out.”
I went numb. I looked at that little boy who had already had open-heart surgery, four missed spinal taps and a balloon catheterization. Failure was out of the question.
I believe God spoke for me now, because there is no way, in that moment that I could have responded with: “Ma’am, I don’t know if you have children, but if you do, I pray they are healthy. If they have special needs like my son, I pray that people will be kinder to you than you are being to me right now.”
“I’m so sorry,” she said, and I believed her. “Let me see what I can do.”
For the test, she had to coordinate the test, anesthesiologists and a cardiologist, but she made it happen two days later. Caleb would eventually be diagnosed with midline failure to close, but his spine, for that time, was healthy.
Fear had made confrontation something ugly and angry in my mind. It had made confrontation something in which neither would be happy, with no growth or understanding. In learning to face fear, I was learning to change the face of confrontation and it would change my life and my children’s lives completely.
The rape and the damaged girl it left behind in tatters would lead to an abusive 19-year marriage, from which I eventually fled, calling upon all of my fear of confrontation. Sure, I was scarred and hobbling, but I had my teenage babies with me. I left like many abused wives, under the watch of a skilled therapist. We slipped out quietly while he was out of town, taking only our clothes and the computer which held all of my writing.
I conquered the fear of being a single mom—I learned that I had lived that role for almost two decades and that fear was baseless.
There would be other fear and fights along the way: fights for inclusion, therapies, proper class placement, medical tests and treatments. When Caleb turned 21, I had to fight to find doctors and dentists who were willing to take him on, since the pediatric world could no longer see him.
But there was this one fear. You know the kind. The kind, that, as a child, made a sweater in the corner of your room at night look like a monster. As an adult, it’s the kind that slips into a dream and rotates that dream into a nightmare that will wake you, dripping in sweat, afraid of the most gruesome corner of your mind.
This fear was “What will happen to my son, the light and love of my life, if I die? Who on earth could care for him?”
If I dig a little further, that fear descends to knowing that, with this child, I am not leaving him to live a better life than I had. We all want our children to know better than we did. Caleb will have a full life, but a much different one than I dreamed for him.
Caleb’s sister, Sophie, is knee-deep into a PhD program in genetics. She is learning computer coding. She knows more in the first second of her waking than I will know in a month. Sophie will live every parent’s dream—she will live a full, satisfying, rewarding life.
My fear of leaving Caleb exploded on October 2. A traumatic act did occur, but to me, thank the Lord, not Caleb. I went into that confrontation with the courage of an All Star sliding into home plate.
The new placement took a few conversations. I advocated for an immediate change of placement, which used that carefully honed skill of quiet confrontation.
I only realized after everything had happened that my entire life had prepared me for that one phone call.
Caleb, though his calm, sweet, strong disposition taught me to fight for him. He taught me to look fear in the face and walk toward it. Like Dory and Nemo sang, “You can’t go over it, you have to go through it.”
Through careful negotiation, I was able to help him secure housing in the Cadillac of homes in our area, with amazing staff, roommates his own age, and a private bed and bathroom. He still attends the day program he adores. Friends and I believe he is the happiest and most independent we’ve ever seen him.
Fear blocked me from ever seeing that Caleb’s life could be this wonderful. The wise Mr. Addair was right.
I know I have many more fears to confront, but I will use this experience as my exemplar.
So what’s on the other side of your fear?
Photo Credit: Dr. Joseph Ivan on Twitter
Neverland Without a GPS 