CHAPTER 1
YEAR ONE: THE LEARNING CURVE
A GIFT OF TIME
A Gift of Time, was written so that our friends could know and understand the situation that our family was facing
We are so grateful for the emotional support from the church, the church members and our friends have given us ... For all the prayer lists that we are on along with all the other countless things that people have done to help us.
In this time of tearful tragedy, our hearts have been repeatedly uplifted by the goodness and kindness of people. It is so very IMPORANT for everyone to know about this illness. For this is no longer a disease that happens to other people.
These letters were written to give some facts that we were, not always strong enough to repeat over and over. That does not mean that we do not want to talk about these things. Only that sometimes we can and sometimes we cannot. One rule that we adopted very early on is that crying is O.K.
So here begins the story of Kari-Ann, David and Jordyn. Kari-Ann and Jordyn had always had an unusual amount of medical problems for such healthy looking young ladies.
In the late summer of 1989 I married my beautiful Kari-Ann, one might described her as the real Western woman, strong in spirit and frame ... The type of woman you would see walking beside the covered wagon.
In March of 1993 Kari-Ann began to have numbness in her right hand, fingers and in her mouth. The numbness quickly spread to her whole right arm. She was referred to a neurologist. Prior to that appointment blood test were taken. On June 15 Karri-Ann was forced to go to the doctors alone due to the fact that I had just started a new job that very day. On this day, Kari-Ann learned for the second time that she was HIV-positive. Not going with her to that appointment is one of the biggest regrets I truly hold onto to this day. In life making money is making life and you just have to do what you have to do when you're the breadwinner weather you like it or not. On hearing this news, tests were ordered for Jordyn and I.
Right after hearing this devastating news we were off to Colorado to attend my sister Johanna's wedding. Not telling Johanna or anyone else the bad news, thinking it would bring sorrow to the festivities. David shared this bad news only with his sister, Michelle. Kari-Ann was in tremendous pain from the spinal tap she received right before we left town. The exhaustion of the long automobile trip, and emotional bombshell was pretty overwhelming, but she handled it like a true champ attending the wedding ceremony, dancing a few slow songs and in general slowly but surely, taking part in all the events associated with a big family wedding. When we returned to Las Vegas, it was off to see the H.I.V/A.I.D.S. specialist to confirm that not only was Kari-Ann HIV positive, but that she was also in a state of full-blown A.I.D.S., with the T-cell count of 38. Mercifully, my test was negative. Our ongoing nightmare was that Jordyn's test was positive. Jordyn was given a life expectancy of 2 to 9 years. We expected nothing less than a miracle for Jordyn. We are all doing a lot of praying. We feel sure that you will join us.
The most shocking thing about Kari-Ann's being positive for A.I.D.S. was that blood tests were required in California before we were married. Why her condition was not found at the time made for a very large and open question that was never really answered.
Things happened so quickly, it's hard to remember how it all fit into such a short period of time. Immediately upon their return to Vegas, Jordyn was operated on for a gland infection. When she got out of the hospital, Kari-Ann traded places with her. Kari-Ann had contracted PCP, a type of pneumonia which is particular to AIDS patients. It is not contagious but never completely heals in AIDS patients. It is most often the cause of death in AIDS patients. Kari-Ann's condition deteriorated at an unbelievable rate. She also suffered from PML. PML is a disease that causes swelling around your brain stem. As the swelling increases it begins to cut off bodily functions one at a time. By August she could no longer dance, she could no longer walk or feed herself. She had also lost most of the power of speech. My Mom, Versiellen, had been planning to come in December too spend the year in Vegas to play with my granddaughter and give us a break. When Kari-Ann first got sick, we thought she had a minor stroke. ... So my Mom had already started moving the date closer.
On August 9, I phoned my Mom in Florida. I said "Mom when I took Karri Ann to the doctor's office today, she said to me, "I know I'm going to die. I know it's going to be very soon. I'm okay with that but don't let them put me in a hospital.... Please don't let them take me away".
Since my Mom's arrival on August 11, she and I have wadded through a lot of problems. We became a part of a wonderful organization known as Hospice. They help keep patients at home and in a state of dignity. Her life expectancy was changed to six months.
On October 26 I had the heart rendering task of explaining to my little daughter that mommy had gone to live in the sky.
Kari-Ann was able to have her last wish. We were able to care for her at home which was so important to her. She died at home in dignity and peace.
Jordyn is enjoying the best health she has ever had, that's due to proper medical treatment. She is taking the only available H.I.V. medicine called AZT. In September she had surgery to install a port-ta-cath. It is like a two way valve in the blood vessel. Through the port they can take blood and give IV treatment. Once a month she gets a gamma globulin treatment to boost her immune system. This process takes about five hours. Trust me, she is one brave little girl.
If you see her looking up at the sky with her little lips moving. Just know she is having a talk with her mom. And she is okay with that right now.
About my Mom and I.. .well I'm very proud of my Mom. We do stress out at times as would be expected, but somehow we have found ways to process the challenges and sorrows in our little world. Together we put together mountains of care, tenderness, kindness and love to make this new little family unit work.
As for me, those of you who know me, know that I was always a little crazy and that hasn't changed. God gave us a "GIFT OF TIME". We think, we used it well with Kari-Ann. Our objective is to keep using that time wisely and joyfully. In Jordyn We have a grand task facing us.
Reverend Schuler once said, "You have a right to be happy in spite of your problems." That is what we have tried to do and will continue to do.
SHOCK WAVE
April 26, 1994
It hard to believe that it has been seven months. Seven months since the love of my life lost her battle against A.I.D.S. Here is the tale of how this shocking story unfolded.
To give you a little background, let's start at the beginning for this very special couple. They met, fell in love, got pregnant and got married. They were not the perfect couple in the beginning. There were numerous arguments in the beginning. This young couple had rules, like no fight ended without reaching a mutual understanding. As time went on, there was soon a new life, Jordyn. A family unit was formed. What a special time this was for the young couple. The addition of Jordyn brought a whole new reason for being alive, a whole new meaning and purpose to work for. As time rolled on, we began to really become one as a couple. We began to grow and learn together. This family learned how to survive some tough hardships. Learned how to scratch and claw in order to stay above water. Then in the month of March, Kari-Ann started having some minor medical problems. First it was in a numbness in her right hand. She did not pay much attention to it, thinking it would go away. Then suddenly she was having difficulty speaking. After a lot of prodding from me, Kari-Ann finally went to see her doctor. The doctor had various blood test taken, including a test for the HIV virus. Meanwhile, Kari-Ann was referred to a neurologist. While at her first neurology appointment, she learned the horrible news that she was HIV-positive, (This was June 15, 1994). I'll tell you to hear that kind of news is just unreal. You feel like you're in a time warp or something. I'm not really sure how I felt at the time, I guess I was really scared.
At first we thought that to be HIV positive was a bad thing, but we also thought, "Hey we can fight this". Little did we know what we were in for? While we were at the doctor's office Kari-Ann had to have a spinal tap.
"No big deal they said," RULE NUMBER ONE: DO NOT TRUST THE DOCTORS.
Kari Ann had her spinal tap and off we went to my sister Johanna's wedding in Colorado. No one really knew what a trooper Kari-Ann was, she was in a great deal of pain the entire weekend. Since it was Johanna's wedding, we decided not to tell anyone the news not wanting to spoil Johanna's big day. Upon arrival in Colorado I couldn't stand to hold it all in. I had to say something because it was really killing me. I finally told Michelle, my other sister, what was making me so crazy. Needless to say, she was mortified but kept my confidence.
Well from here on it starts getting really crazy. Once we were back home from the wedding, our little Jordyn had develop small bumps on her neck. After consulting with a doctor, she had surgery to remove them. So Jordyn spent three days in the hospital. While we were at the doctor's office, Jordan and I were tested for HIV virus. A couple days later I started working at a new job. Being the new kid on the block, I could not take time off to go to the second doctor's appointment with Kari-Ann and boy I wish I'd gone! As I turned in the apartment complex, I saw Kari-Ann sitting out front of our apartment. I knew that the second test was positive as well. I do not think I will ever get that scene out of my mind as long as I live, poor Kari-Ann. For me there was nothing I could say, there was no way for me to make her laugh. Oh my God, what do we do?
Things began to move faster now. Together Kari-Ann, Val, Karri Ann's sister, and I went to see the AIDS specialist, Dr. Cade. What a day to remember! I don't really know what made me ask the questions I asked, but I just had to know. For the first time in my life I felt like a real adult. Being a so-called head of household, I had to know what I was really dealing with. I would have given anything to not be that person, but I guess sometimes you are just chosen. It is hard to remember, once in a while, some of the events. But I know I will never forget the way I felt when I asked Dr. cade "how will we know when the HIV virus turns into AIDS?" His reply was that Kari-Ann was already in the AIDS classification. To me that was a tremendous shockwave. We went from fighting the HIV virus to fighting AIDS on the same day. Big difference! Once again I have to say that everything happened so fast some of the facts might be kind of foggy.
Even with all the terrible news we went home prepared to do battle. That was on Monday. Little did we know what would lie ahead? Along comes Friday like usual I get up to go for work, get my stuff ready, I am almost out the door when I go back to kiss Kari-Ann good-bye and noticed that she had a little fever. At the time I thought nothing of it. However, after I go to work I started to think about that fever and thought it could be a big problem. So I went home. Once I got home Kari-Ann's fever had subsided and I thought all was well. You know that a normal person with a fever is nothing special. This is not so for an AIDS patient. Soon the fever returned and I began to worry again. So off to urgent care we went. After threatening all the people involved, they finally admitted Karri Ann. One thing led to another and soon she was in the hospital with pneumonia (the killer of AIDS patients. I thought). I was wrong. Kari-Ann fought back and beat that pneumonia and got to go home. Little did we know what a bad turn the disease would take?
People will never really know the speed with which this disease can strike. For Kari-Ann it was lightning fast. Within six or seven days she went from being able to walk and talk to hardly being able to sit up in bed. I knew things were really bad when Val came over to help and she broke out in tears upon seeing Kari-Ann's condition. From that time on Kari- Ann was confined to a wheelchair. It was time once again to see Dr. Cade. On the drive over to Dr. Cade's office I stopped and had a talk with Kari-Ann. I asked her what her wishes were. What do you want to do with the situation? I told her it was her life and whatever she wanted was what she would get. At this point Kari-Ann became the bravest person I have ever known when she said "David I know I'm going to die and I do not want to fight it, just let it happen, "she also said, please no more hospitals!" So we made it happen! We got a hospital bed from the union hall and designed a room for Kari- Ann's final days. Days later my mother Versiellen threw all her belongings into one bag and came to help me with Kari-Ann. From then on Kari-Ann had her ups and downs and I hope maybe even some happy days. As quick as it started it was over. October 25, 1994 she was in a tremendous amount of pain. The drugs I had access to did no good. We soon brought in the hospice nurse. She brought the real deal Morphine. Just minutes after the shot Kari Ann was at peace, no pain, no struggle.
On October 26, 1994 my mother called me at work. She said that the nurse had been by and said since Kari-Ann's body did not have to fight the pain anymore, she should probably be able to pass on in peace. Well as I drove home, I tried to take in everything so I could remember this day. I bought her rose's one last time. A couple hours after I was home, she finally slipped away. No more pain, no more struggle, she was finally done.
As for the new family unit, Jordyn, Versiellen and David, that's another story itself.
WHY?
Why??? That is the big question I ask. Why did God have to take the life away from a person that had so much to give?
Why does God impose such horrible illnesses on little innocent children? What is the purpose for making these children suffer? Although, I would have to say He, at least gives these special children an unbelievable amount of cheer and courage. I have watched these little kids play at school and wonder if they know as I do that they are so special.
I remember the first day I picked Jordyn up from Reach Out, a special day care for kids with HIV/AIDS, I looked around and saw all these beautiful children and wondered how long I would see them here.
You know it's not just the HIV kids though. I remember when Jordyn went to the hospital to have her Port-A-Cath put in. There was this little girl in the next bed who had leukemia. What a terrible thing to have to go through chemotherapy! I thought this poor little girl lost all her hair, but when asked about her hair her only response was, "well at least I don't have to brush it anymore". What a beautiful silver lining that little girl found all on her own.
The hardest part of all this is who do you trust with the life of your little girl? With HIV being so new to this world, I sometimes think that the doctors don't really know what to do. It seems that they are following this formula and they have blinders on. Therefore, they may not be open to new ideas that might be of extreme importance.
Here I am, a single father that has to make basically life and death choices for my daughter. Whether I choose AZT or go the natural route. It is a gamble with my daughter's life. My gut feeling is to take her off all this mass amounts of chemicals. Something inside me tells me AZT is wrong, but there is that chance my gut feeling is wrong. What a perplexing position to be in. You get all the advice you can from everybody you know, but in the end it all boils down to the making the decision.
WHAT TO DO?
WHO TO BELIEVE?
WHO DO YOU TRUST?
In my life, I have been in a lot of difficult situations, but NOTHING has prepared me for the choices I have to make now. The really terrible part of this is that I can make all the right calls, but still lose my LITTLE GIRL.
To watch this little girl over the past four years has been nothing but pure pleasure for me. I try not to think about the future very much. Although, it is hard not to have dreams for your child.
All my life I have wanted to be a Daddy. I don't know how a parent could choose not to be a part of their child's life. I remember when Jordyn was first born, I felt really weird, kind of left out. I did not get that overwhelming feeling that I thought I would get. I really felt left out. However, as time went on that feeling hit me like a ton of bricks. Having Jordyn gave my whole life purpose. It made going to work more enjoyable. Finally my life had a real purpose to raise my little girl. What a turn on it was. When Jordyn says to me, "Daddy you make me so happy," that is the greatest feeling in the world.