"Behold, a leper!"

Lindsey's determination had always overcome the relentless HIV issues she had been aware of for most of her life. Despite the inherent questions she would have had from being adopted, Lindsey also was burdened with waking up every day to what must have been varying degrees of feeling cursed by elements of her own body. To carry the load of being diagnosed with not only the plague but the stigma that comes with HIV is a formidable obstacle that would be overwhelming for an experienced mind that no one should have to bear; but the developing mind

of a child, one has to assume that there would have been many lonely nights in bed alone, staring at the transition where the wall meets the ceiling that would bend and saturate the senses. Over the years, doctors and critics would even question the legitimacy of Lindsey's right to have survived and pursued the family with the insatiable desire to make sure Cheryl and I were always aware that Lindsey was going to die.

The diagnosing elites have always seemed eager to predict a bleak future without hope. When we lost Lindsey, Rico, and finally Cheryl, these predictions of imminent death felt like a self-fulfilling prophecy. This prophecy, however, did not emanate from divine foresight, but rather, it was forged by the hand of humanity itself, set in motion, and ultimately fulfilled by the very elites who claimed authority over the course of events.

Repeated proclamations of an inevitable death brought with it a fate of hopelessness by the repeated claims of the need for a black-label drug as opposed to the potential of resilience. Lindsey would now be burdened by the elite's predetermined verdict, reinforcing the notion that their diagnoses were irrefutable and absolute.

In the face of such a relentless onslaught of pessimism, we grappled with the stark realization that these dire prophecies were crafted by fallible human hands, driven by their biases, limitations, and preconceived notions. Their words were heavy, and it felt as though we were navigating a labyrinthine web of expectations that led us inexorably toward the very outcome they had anticipated.

As an infant, the doctors were quick to inform us that Lindsey may not survive beyond six months to two years. Dr. Belani, her first doctor, was particularly insistent that the last half of her possible two-year death sentence would be grueling, sickening, and without hope. Her second doctor, Dr. Hostetter, reiterated, "AIDS is a fatal disease, and that no medical practitioner should display confidence that they can prevent a fatal outcome." Even Lindsey's last AIDS doctor, Dr. Henry, who still works at Mayo Clinic, stated that Lindsey might live to be six or seven but not see double digits. This declaration was made when Lindsey was over three years old and playing on the floor before her.

For 22 years, we had given Lindsey the space to grow and experience life like any other child; there were no exceptions to this. The goal had always been quality of life for Lindsey. With this, she thrived, was independent, and was the only child to have been taken off the drugs, resulting in her being the only child to have survived being treated by the abovementioned doctors. While there was no way to shelter Lindsey from her inner feelings, we were able to shield her from the majority of the incoming morbidity that the anxious critics felt compelled to chant from their elite status, but now, with Rico separated from his mother, we could no longer shield her, and everything good in life including her newborn infant would be taken away not once but many times. Now the same darkness that has befallen Rico's every attempt to survive encompasses every part of Lindsey's existence while also affirming every negative conjecture that had ever been forced on Lindsey and her mere existence. Every future goal and positive experience that any civilized person would consider as being an acceptable life was gone in an instant.

In the early 90s, Cheryl, with her perceptive wisdom, adeptly chronicled the pressures and challenges that enveloped us as parents. Our journey as parents revolved around shielding Lindsey from the storm of a tempestuous world that surrounded her daily. 

Cheryl's notes 

We had kept Lindsey's diagnosis a secret from almost everyone, including office pals, friends from church, great aunts and uncles, our photographer, and friends from high school. There were lunches and baby showers. It was sometimes very difficult to put on a happy face and have people wanting to see the baby, knowing she was probably going to die in a short time from the deadly HIV virus. And what would they say when they found out they had held onto a baby with such a diagnosis?

Our family lost a good number of friends and relatives that we could have enjoyed being with. Some of our children became acquaintances, not friends. We all lost potential life-enriching experiences, and stability, things that family/friends provide. One person referred to Lindsey as having a "tiger running loose in the house."

Around Christmas time [1993], I wrote a letter to the parents in Lindsey's nursery school class at a new church we had begun attending. The leader of the children's ministry thought it would be a great idea and backed me up 100%, or I would not have done it. She herself had no problem having Lindsey, now 3, in her Sunday school and felt the other parents would also be accepting. I wrote that after studying HIV for nearly three years, I could assure them there was no way their child would contract HIV from Lindsey. Using CDC statistics, I explained that we were the ones taking the risk of having Lindsey in Sunday school with their children, as she was the one with a compromised immune system. I wrote, "HIV/AIDS is a controversial medical issue right now and the purpose of this letter is to address the facts as we know them." I noted the 4 ways the CDC notes that HIV is transmitted. Then I closed the letter by telling the parents and staff that if they had any questions or concerns, they should call me, and we could meet for coffee or whatever they felt comfortable with. 

Things were going great at Sunday school. I did not think anyone was overly concerned and did not act differently toward Lindsey at all. That is, until February 7, 1994. John Forker had grave concerns. First, he called the toddler's Sunday school class instructor. She referred him to the Sunday school director, whom he called at her home. He told her, "its imperative that I talk to Mrs. Nagel right away." Reluctantly she gave him my number, and he called. (He must have misplaced the letter I gave to all the parents, which included my phone number.)

I was not prepared for such a vicious verbal attack! He told me I was in denial. He told;d me to give him some facts, but when I did, he talked right over me. I told him I did not expect anyone to believe the same way we did but begged him to at least believe what the United States Center for Disease Control now believes about HIV and how it is transmitted. He kept asking, "What about the 1%?" He was referring to a teeny-weeny percentage where HIV -might- be transmitted. He asked about biting behavior. I told him that saliva would be any minuscule amount of HIV that could possibly be in the child's mouth. He said he "didn't trust doctors as far as he could throw them." Several times I offered to mail him all the material we had gathered with facts about HIV and how it is transmitted. He would not hear of it.

The conversation abruptly changed when I asked him if he had attended last Sunday's church service. The topic of Pastor Dave's sermon was lepers (undesirables). The pastor told the congregation that in Bible times, if the guard at the city wall spotted a leper approaching, he would holler out, "Behold, a leper!" The pastor was saying that some people still act like this today. I told John that I knew exactly how those lepers felt and that John was the one hollering out, "Behold, a leper!" It was then that John told me I was getting off the subject. As soon as he said that, I said, "Nice talking to you John Gotta go fix my supper." And I added, "My daughter and I will be coming to church every Sunday, so it is up to you what you want to do." Then I hung up the phone! I was shaking but proud of myself!