Sunday, September 30, 2007

Compassion

Yesterday, after she read my entry, Lessons Learned, my good friend Blythe said to me that I needed to add what people can say that will be helpful instead of just saying what not to say after I have told them my news about Karl. I thought about this after our conversation and the answer came to me on a walk in Duke Forest.

Little Bear and I were on our return trip to the wooden bridge and met a group coming toward me. I realized it was Adam Abram and his family. I worked for Adam part time 20 years ago as an office assistant in his commercial real estate firm while I was getting my plant nusery started. I stopped them and introduced myself. We have been distant neighbors all these years and our paths just haven’t crossed. They said they think of me often as they turn the corner and pass our nursery sign. I told them we had decided to have a “Going Out of Business” sale next spring. It was time for me to move on. They were full of good questions and I explained about Karl’s death and my need to do some sort of work around children. I also explained about our UNC book drive and they were most interested. I felt myself tensing up for the typical sharing of another’s medical story and to my extreme relief it didn’t come. The only thing that was brought up was of interest. Their handsome son explained that his college roommate had lost his mother to cancer and he had started a similar book drive in her memory.

I came away from our encounter feeling good. The words sympathy and compassion were running through my head. That is what I need as a response to my sad news of Karl’s death. They genuinely cared about how I was doing and did it in a way that didn’t leave me crying, but feeling good about the work I was doing in Karl’s honor.

So, compassion is what you should give. It doesn’t have to be long and wordy. Just real. Thank you Abram family for helping me find my answer and for your compassion.

Love, Kathy

Saturday, September 29, 2007

Bookcase History

When we started going to the UNC Pediatric Oncology Clinic 3 ½ years ago, there was a wooden bookcase in the hall and usually there were some new books on there and we were told if we were interested we could take them home. Karl and I always looked, but usually didn’t find much of interest. The bookcase donations were started by a woman who had been an educator for years, loved children and she too was being treated for cancer. The books were from a publisher and were pre-proof copies. At some point this nice woman died and the flow of books stopped. For a couple of years those shelves have held the odd assortment of magazines that often end up in a doctor’s office.

A couple of weeks after Karl died in March, Chink and I agreed that we would like to do something for the clinic. They had been so kind to us and we were thinking there must be something we could buy for them. Dr. Gold suggested we put books on the shelves again. He knew how much Karl enjoyed reading and he daily saw those empty shelves. I thought it was a great idea and took it on as a project. I contacted our loyal friends who had supported us for three years and many of the local ones wanted to get involved. I asked Valerie to be a drop off point and we got the word out that we wanted new or gently used children’s books—preschool to early teens. Many people donated books their children had out grown and that got us started. The main difference between this supply of books and the ones that used to be on those shelves is that these are books our children have loved and read.

The clinic staff is so pleased to have these books for the young patients they care so much about. They tell me it has become the first place most of the kids head to after they have been checked in. They want to find a book. Dr. Gold is amazed how popular the books are even though it was his idea in the first place. The children can read the books while they are in the clinic or take them home if they want to. They have a lot of boring waiting around time—in the clinic and in the
car ride home. The books give them comfort they so desperately need.

Since I've been a mom and go to the clinic every two weeks to restock the shelves, I can see and have a good feel for what the kids will like. New preschool boardbooks and new releases are needed and I'd like to have the money to buy these. I can get discounts from local bookstores because I am buying books for the hospital and have ordered online and gotten good deals. This is why we are asking for money donations.

Thanks to those who have helped me make this possible.
Love, Kathy

Friday, September 28, 2007

Lessons Learned

Three and a half years ago it was very hard to tell people that our beautiful 10 year old son had a BRAIN TUMOR. Our hearts were bleeding and our souls were exposed. We expected sympathy and a hug if we knew the person and we always got that. But, what often followed was a story of their own---someone they knew or had heard of, who also had a brain tumor or had died of one. I used to stand in disbelief that this person thought I would want to hear this. Chink and my mom also experienced the same situations. I am not a psychologist, but it didn’t take me long to figure out that this must be some part of human nature to feel like sharing—almost by sharing they were letting us know they could relate to our pain. This is a lesson the three of us have learned. If some one tells you something like this, be a good listener. Give them sympathy and understanding and close your mouth on the stories that will probably pop into your head. They DO NOT need or want to hear them.

The other thing that is related to this, has only happened to me. Chink is not a talker, my mother is Karl’s grandmother and most people can’t relate to the fact that she is grieving so much, so this lesson is about Karl’s mother, me. I cried about this during the days before his death. Who could I be daily friends with? Some of the best friends I have ever made are mothers of Karl’s friends. I find it hard to make good friends. For 20 years I have been self employed in a perennial nursery where the other two workers are my mom and Chink. I loved the time with nature, but there weren’t many other people around. So, through Karl, I made friends with some wonderful people who will always be my friends, but we will no longer have the kid connection. We are going to work at remaining friends, but I knew even before he died I was going to have to move on and I didn’t want to.

One of the things I’ve done is join Meadowmont, an exercise center. My good friend Kitty Harrison helped me join and encouraged me because she knew the exercise would be good for me. She has been right. I do feel better for it. I had thought it might be a place to meet some new people, but as I look around, most people are churning away on their machines with headphones on listening to their form of escape. One day I did find a delightful woman walking the upstairs track as I was without headphones on and I complimented her on her hair, she smiled, and we ended up walking our mile together talking. Of course the conversation turned to the lack of rain and I found out she lives in the neighborhood near Phillips Middle School where Karl was a student. I know the neighborhood well because I used to take my dogs and walk before it was time for the last bell to ring to end the school day. I mentioned that my son used to go to school there and she eventually asked if he was at East Chapel Hill High School. I had to say, no I’m sorry to say that he died this spring and went on to explain that I was doing this book drive in his memory. She of course was shocked and as she recovered she started sharing stories with me about her 28 year old niece who as breast cancer, and the stories continued. I came home telling Chink about it and his reaction was just don’t mention it. But, this is what women talk about. We ask each other about our families, where we live, where we work. Karl has been the center of my life for 14 years and I don’t want to cover that up. I can’t. But, what I also can’t do is hear other people’s serious health problems right now. I mean, I know nothing about breast cancer. So, what I have been practicing is right after I tell them that Karl has died, I have to tell them that most people seem to need to share some health problem they know of, and right now I can’t handle that. This is hard for me to do. Basically saying “shut up” in a nice way. I have been role playing with myself on my dog walks in the woods. Karl and I used to role play situations that were bothering him. So far, I haven’t gotten up nerve to say it.

So, once again the lesson is to be a good listener and then shut your mouth to those thoughts of sharing other stories. Mothers like me are maxed out in that department.

Thanks for letting me share. My love,
Kathy

Saturday, September 22, 2007

Some of our History

It has been almost exactly 6 months since our beautiful son Karl died. He travels with us daily and we feel honored to have had him physically here with us, even if for such a short time.

My husband, Chink, and I heard about Karl's brain tumor on a Tuesday afternoon in March 2004 after Karl's first of many MRIs. That news changed our lives forever. The next morning we told our then 10 year old son that he would not be going to his 4th grade class at Ephesus Rd Elementary School, but would be going to UNC Hospitals again to hear the results of his MRI. We were more than willing to have his new doctor explain the facts to him.

That was the morning we all met Dr. Stuart Gold for the first time and I remember he was wearing pants about the same color burnt orange as this page heading. He has since become a very good friend and I know from experience that he has a heart of gold, a calming and hopeful spirit and he relates wonderfully with his young patients.

As we walked into the oncology building for the first of many times, I can remember thinking, "Does Karl know what oncology means?". In the 3 years we were dealing with his brain tumor, I never once thought of it as CANCER. We always treated him as a normal kid with a health problem and we just tried to get on with life as normally as we could. He was never a complainer. He just seemed to know this was what he had to do.

Each visit we made to the hospital--usually every two weeks, included a bag of books and his Gameboy.He didn't like to waste time and he hated being bored. He had a wonderful ability to concentrate and this allowed him to escape into a terrific world of fantasy.

With the help of drugs, radiation, acupuncture, supplements and good food, prayers and lots of love from family and friends, Karl lived a much longer life than anyone in the medical field expected. Up until the last 6 weeks, he was able to stay active and in school and he continues to be an inspiration to everyone his life touched. With the help of UNC Hospice, we were able to care for him at home--he never spent a night in the hospital. My husband, my mom, Josie, and I were all with him here at home in his comfortable room when he died. He hung on as long as he could and we told him it was time to go.

We thank you for your continued support. I plan to use this site to relate my stories about my clinic kids I've gotten to know through this very worth while book drive. I want to share what a wonderful impact these books are having on the kids who unfortunately find themselves fighting very early for their lives. A child's world should be filled with make believe and fantasy and that is what I hope to help them with.

My love,
Kathy Humphries