A Glimpse of the Past

A couple of years ago I started chatting, via e-mail, with a very dear friend who is faced with the challenge of raising a child with health issues. My e-mails were intended to encourage her and I pray that they did, but they also encouraged me. I relayed much of Christy’s medical history to her through those e-mails. BTW – I did have Christy’s permission to share, I always tried to be respectful of that. I saved all of the e-mails. At the time I wasn’t sure why, now I know why. I thought I would share portions of them with you. This post may jump around some but this is a compilation of several e-mails. This is pretty long so you may want to get a diet coke and some chips, I mean veggies to snack on.

When Christy was 2 1/2 she started crying when she would stand in the mornings, she also did this when she woke up from a nap. She wouldn't let you stand her up, she would curl her legs up under her butt and just refuse to stand. She would be fine after being awake for 20-30 minutes and she remained very active otherwise. I took her to the doctor and she thought that it was probably just growing pains. That was around Nov through March of 1982 & 1983. Then nothing until November or so of 1984. My mom had died of breast cancer in August of that year and I was still trying to recover from that when it all started again, only this time it seemed to be worse. My pediatrician was having a difficult pregnancy and wasn't seeing patients so I was going to her associate, who will remain nameless because I know lots of people who love him. Anyway, he just couldn't find anything wrong with her. I kept telling him that the problem was only when she first woke up. He scheduled all of these odd appointments for me trying to see her when she first got up in the morning or from a nap. But by the time I would get her up and get all the way to Lexington, she would be fine. We probably saw him at least once a week for several months. He ran all kinds of tests on her, blood work, x-rays, you name it, and nothing. The last time I went to him he took me in his office and sat me down and told me he thought I needed counseling, and he was serious. Here I was crying every time my baby woke up because I couldn't make her stand on her two feet and this man thought I was a nut job. I left that office hysterical and swore I would never go back. So I found a new pediatrician and she diagnosed Christy the very first time she saw her. Which made me both happy and sad. My grandfather, who I loved dearly, had a very serious case of rheumatoid arthritis, so I knew first hand what that was going to look like. His started when he was four and I now know, even though my granddaddy was never diagnosed with juvenile rheumatoid arthritis, that he had it too. His father died at the age of 36 from a morphine overdose trying to control the pain from his rheumatoid arthritis. So, there we were. My sweet beautiful little girl facing a life of pain and agony. How was a mother to cope? Dr. Lynd was great, she started Christy on aspirin, which is always the first drug used for JRA (RA too). It worked for a while and when it stopped working she started her on gold shots, yes real gold. In some patients the gold coats the joints and helps them to move more fluently but it never really did much for Christy. The very first day we saw Dr. Lynd she told me about the program at Children's in Cincinnati and told me that she wanted Christy to go there. We were all for it but it was going to take some time to get her accepted into the program. They only accepted kids that had severe cases and the waiting list was very long. Things went pretty well for us during the two year wait to go to Children's, life was fairly normal. We just always had to wake up early so that Christy felt well by the time she needed to go anywhere. Baths had to be taken in the morning, as they always made her feel better.

We went to Cincinnati the first time in November of 1985, they were great and we felt very confident when we left there. Her rheumatologist was Dr. Joseph Levinson, an older man but as we learned later, the country's top pediatric rheumatologist. We were coming back in January for a two week stay at the hospital for intense physical therapy, Dr. Levinson thought it would help her mobility. I was 6 months pregnant with Kyle that January and already pretty uncomfortable. They admitted her on a Sunday and on Monday started a ton of tests. At the end of that day Dr. Levinson took us into a consultation room and we were told that they believed Christy had lung cancer. He flipped on the switch for the x-ray and it certainly didn't take a genius to see that both lungs were completely covered. I was devastated, I had lost my mother to cancer only two years prior and now I thought my baby had it. I couldn't have felt any worse. They took her into surgery the next morning for a lung biopsy. They would send the specimen off for testing and we should know the results within days. The days turned into two weeks and still no conclusive answer. We went home knowing that she didn't have cancer but not knowing what she did have. It turns out that there were 3 other cases in all of the United States of kids with rheumatoid nodgels in their lungs and I now had number 4. If it's rare, Christy wants to hop on that bus!

After the cancer scare and recovery from that Kyle was born and my life turned upside down for other reasons, which I won't go into detail about but as you know it all ended in an ugly divorce. It was a mess and a difficult time for all of us. Arthritis tends to flare when you're under stress so this was a pretty hard time for Christy. I settled into being a single mom with two kids and we did the best we could. In the summer of 1989 Christy was admitted again to Children's just as I started a new job. What a nightmare. I had to work, she was in Cincinnati and so I spent hour’s everyday driving back and forth. Her grandmother(Moffie) stayed with her most of the week and I stayed on weekends. I drove up after work every day and would spend a couple of weeknights too. I would get up early and drive back to Lexington to work. A difficult time but worth it, Christy responded well to the intense therapy and life was good. She was hospitalized again a couple of years later for most of the fall months. She was admitted in September, came home for the Thanksgiving weekend and finally released about 10 days before Christmas. Arthritis has times of active disease and times of remission, during her bouts of active disease they wanted her in therapy most of the day in hopes of controlling it somewhat. Looking back on those days I wonder how I ever survived it. I would leave Kyle with my sister-in-law and he would be bawling his eyes out begging me not to leave him but how could I leave Christy in that big ole hospital without me? Children's was great about letting siblings stay too so on weekends Kyle would go with me. I often wondered if his little mind thought that place was Christy's home. By the grace of God we survived it all.

You know what always really bugged the crap out of me? Total strangers would walk up to me and ask me what was "wrong" with her. My standard answer was, "nothing, why do you ask?" I'm so hateful!! Then, I can't tell you how many men would ask me if she was going to Shriners Hospital, and no matter how much explaining I tried to do they always insisted I should take her there. (They were shriners and I think you had to be referred by a shriner to go, so they thought they were doing me a favor). My sister-in-law was with us one time at the Jessamine Jamboree when a lady asked Christy what was wrong with her, my SIL's head did a 360 and she looked straight at that woman and said, "What the hell is wrong with you"? I just grabbed her by the arm and pulled her away explaining that it was just best to ignore people’s ignorance. But that stuff really drove me insane. The hardest part was trying to help Christy understand how ignorant people can be. I know they didn't ask to be mean, but as a little girl she had a hard time understanding that. My own family made me crazy too. The doctors at Children's made it perfectly clear that I had to MAKE Christy do everything she was capable of doing, so I always did. She would pout and whine sometimes, and of course I would always help her with things she just couldn't do, but she always had to try. Anyway, my family thought I was being cruel to her. My Granny told me once that I was the meanest mother she'd ever seen, "How can you sit back and watch that baby struggle and tell us we can't help her?" Hum, because I love her and I want what's best for her. My Granny just loved her so much that she couldn't stand to watch her struggle. Granny just didn't understand that she had to struggle to persevere.

The teenage years were really hard for Christy too. I remember one night in particular, I was sitting in the living room watching TV when she walked in, sat down with me and just started bawling. She asked me if she would ever be asked out on a date. Well, I can't tell you how very difficult it was for me not to just start crying with her, but I sat there for a minute and then just started talking. I know now looking back that God directed those words but at the time I was thinking, where is this coming from? I told her that yes, she would date and that one day she would fall in love and that the person she loved would love her too. I even told her that I knew he was gonna be a pastor. Can you believe that? We just sat there for a long time, her crying and me talking and stroking her hair. We had way too many nights like that.

When you have a child with health issues school can be interesting. With the exception of one jerk Christy always had amazing teachers. The school provided Christy with physical therapy twice a week, which was wonderful but she hated it. She just didn't like to be singled out because of her arthritis for anything, she didn't want to be different from any of the other kids in any way. When she was in middle school the husband of one of her therapists from Children's accepted a job at UK and Sandy (the therapist) was hired to be the school therapist for Jessamine County. We were so thrilled with that, she knew Christy upside down and inside out. She remained the school therapist until Christy graduated. (I think she's still there.) Sandy would attend all of my IEP meetings, I'm not sure what IEP stands for but all kids with health care needs fall into the program. All of Christy's teachers, her guidance counselor, and principal would attend these meetings. They are designed to set goals for your kids and make sure the school system is doing everything possible to meet these goals. During Sandy's first year there she asked if the Board of Ed would buy Christy a laptop to do homework, holding a pencil can be very difficult for arthritic hands, and they did. It's a great program but I think that as a parent you need to be extra involved to make sure your kid gets everything they need.

Okay, I'm sharing something here that Christy never knew. When she was in 8th grade someone from the Friendship Study at Cincy Children's called me and asked if I would allow them to do a study on Christy. They explained everything to me and I did allow the study. They contacted her principal, and only the principal knew who they were actually studying, and she agreed too. They came to her class, it was her English class, and told the class they were doing a friendship study. They presented themselves as being from the University of Cincinnati, Christy thought they were from the college not the hospital. They gave the kids about 5 pages worth of questions to answer. Questions like...............Who is the most attractive student in your class? Who is the least attractive student in your class? If there was a fire drill, which student would need help exiting the building? Would you be willing to help this student exit the building? Who is the smartest student in the class? Who is the least smart student in the class? Who is your best friend in the class? Who is your least favorite person in the class? All of this was done to see how kids with disabilities are accepted by their peers. They gave me the option of knowing the results of the study and warned me that sometimes the results were hurtful. I did ask to receive the results and I was very pleased to learn that Christy was very well accepted and loved by her fellow students. I know that a lot of people would have said no to the study but these kids have such a hard time being accepted and I really wanted to do anything I could to help find answers for them.

Well, that’s it for the e-mails. Maybe I will continue to write about Christy’s past and the disease that controlled much of her life.

Thanks for letting me share.

Loving my girl,
Julie