by Jane A. Smith
Special Dedication to Mr. Don Scott, Diabetes Educator, St. Luke's Hospital, Boise, ID
Valentine's Day 1994, changed our lives forever. Our youngest daughter, who had just turned nine, ended up in the hospital. Diagnosis: juvenile diabetes. Even though her blood sugars were under 400 she was in trouble with ketoacidosis. Her body was slowly killing itself. Our long journey had begun.
I had started to notice changes in Chelsey some six weeks before she was diagnosed. She was extremely thirsty all the time, she had to go to the bathroom constantly, she was always tired, she was irritable, she had a giant growth spurt, her skin was so dry it flaked off, and she was losing weight. She woke up one morning complaining with a sore throat and a throat culture showed she had a strep infection. I was relieved to be able to blame strep for her symptoms instead of something more serious. After being on antibiotics for a week, she started to improve. It didn't last. My heart sank, and I could not get a reccurring thought out of my head. I couldn't sleep.
The thought she might have diabetes gnawed in the back of my mind because a year earlier our next door neighbor's young daughter, Carrie, had gone through similar symptoms and was diagnosed. Since our neighbors are like family to us, we shared most every aspect of their experience with this disease. The fact that this had happened convinced me Chelsey could not possibly have the same thing. The odds would not allow two children living next door to each other to have diabetes. In fact, I couldn't tell anyone about my fear because I simply did not want it to be true. I thought about testing her blood with our neighbor's glucose meter, but couldn't quite bring myself to do it.
On the Sunday before Valentine's Day, Chelsey had an extremely difficult day and night. She complained that her stomach hurt, and she wanted to sleep all the time. I was awake all night trying to convince myself that diabetes was out of the question and that it had to be something else. In fact, I decided it was probably a bladder infection, since she was very susceptible to them. I prayed to God to please let my daughter, my breath of fresh air, be all right.
I made an appointment with the doctor the next morning. When we got to the office, I asked the nurse to please check for sugar in her urine when they ran the test for a bladder infection. She wanted to know why I asked, and I told her to just humor me. Less than a minute after the test was taken, the nurse came back into the room with a glucose meter in her hand. As soon as Chelsey and I saw the meter, we both knew what it meant. We remembered our experience with Carrie. We even had to help the nurse use it because she wasn't sure exactly how it worked! Waiting for the meter to count down was like being trapped in a time warp. Forty-five seconds had never seemed so long. The glucose count of 396 will always ring in my head. Chelsey had diabetes.
The doctor immediately entered the room, took one look at us and said, "You look as if you already know what I am going to tell you" When I told him that he didn't have to tell me because I knew that Chelsey had diabetes, he was astounded. He asked me how I knew, and I told him about our neighbor's daughter.
Now begins the story of a very extraordinary little girl. I've only seen Chelsey cry one time about having diabetes and that was that day in the doctor's office when the doctor put his arms around her and asked if she had any questions. When she said, "Do I really have it?", and the doctor said, "Yes," two giant tears trickled down her cheeks as she wiped them with the back of her hand. We found out later she was afraid of going to the hospital. She had been with the neighbor girl when she was taken to the hospital and held her hand when an IV was put in. Chelsey was afraid of the IV.
"May I please call my husband?" I asked the doctor. He took me to another room to give me some privacy and I made the call. "I need you to come to the doctor's office right now," I told him. "Chelsey has diabetes."
There was total silence on the other end of the line and then, "I'll be right there."
I went back to Chelsey and held her until her dad arrived, reassuring her that everything was going to be all right. I'm not sure if I was trying to convince Chelsey as much as I was trying to convince myself. All I could think of was we would do this together -- Chelsey, me, her dad, and her sister Jenny. Oh my gosh, Jenny!
How were we going to tell Jenny? She was 15 and even though she and Chelsey are six years apart, they adore each other. Being 15 is hard enough without having to deal with a challenge like this. Jenny is our caring, sensitive, mothering child. She was not going to handle this very well. Especially since a year before, her very dear friend Carrie had faced this. Life is definitely not fair. Ken went to get Jenny out of school and I took Chelsey home to pack for the hospital.
My best friend in the whole world other than my husband is Cathy. She just happens to be my next door neighbor and the mother of Carrie who is the child with diabetes. All I could think of while we were packing was of calling her. I remembered the fear I had seen on her face the year before, and even though I tried to be there for her and understand what she was feeling, I really did not comprehend the overwhelming heartache. That is, until that moment.
I called her at work and waited for her to come to the phone. When she said hello, I told her I didn't know where else to turn because I knew she would understand what I was feeling. I said, "Cathy, I don't want you to do anything, I just want you to know that Chelsey has diabetes and we are on our way to the hospital."
At first there was silence and then she began to cry. I felt guilty for dumping on her, but for some reason I felt compelled to connect with her, and I believe she knows why. I can't explain this feeling, but have an intense belief it is in God's plan. I believe he has brought us together in this special way to help us cope with the challenges of this disease, or the "Big D" as Chelsey calls it. For that I am grateful.
Finally, Ken and Jenny arrived home and for a brief moment a certain calmness settled over our house. Jenny went to Chelsey, hugged her, checked her overnight bag, and made sure her little sister knew how important she was to her. We were all together and determined to handle this by helping each other. I know we were all thinking to ourselves about anger, disappointment, helplessness, unfairness and asking the question, "Why?" I don't remember many details between home and the hospital, but know we arrived together as a family and stayed together. That is how we cope.
The hospital is a scary place, especially when you are nine years old. Because Chelsey was so young and so dehydrated, the floor nurse called an emergency room technician to insert the IV. As I prayed to God to help the nurse be successful, she managed to hit a vein on the second try and it took. Chelsey's greatest fear was over! The greatest challenge in our lives had begun.
Information, classes, visitors, nurses, blood tests, shots, flowers, balloons, Nintendo, hospital bed races, other kids, ketones, food, insulin, glucose, workbooks, insurance, glycosylated hemoglobin, doctors, meters, strips, finger pokes, pancreas, beta cells -- all are relevant to diabetes. I had never heard so many scary sounding words. Over the next five days so much information was thrown at us I thought my head would explode. There was just no way that I could do everything expected of me. Now, instead of balancing my checkbook, I was learning information on how to balance glucose levels with insulin, diet, and exercise. I knew it was imperative to learn as much as possible because I was dealing with the life of my child. If I failed, my child would suffer and pay the penalty. My brain was saying I can't do this!!!!
The key word here was "I". I had to learn no one can do this alone. When the reality set in, depression bared its ugly head. One day I took a walk down the hall and ran across another mom. Her child was in the intensive care unit and had cancer. It had been the third or fourth time the child had been there but was responding to treatment. The mom was so thankful that her child was going to live another day she glowed with happiness. A new feeling of confidence overcame me, and I realized that while diabetes is a giant obstacle, there are a lot of people who would trade places in a second. Leaning on family, friends, and faith was, and is, the only way to deal with all the feelings that come crashing in. And even though sometimes things are still hard, I try to remember that mom. It helps bring me back to reality. My child can live a normal life.
After five days in the hospital, it was time to take Chelsey home and start relying on the information we had tried to learn. Somehow, I couldn't bring myself to want this next step. I felt she was safe as long as she was in the hospital where there were trained people to take care of her. I wanted to run.
This is where my best friend, my mate, the person who knows me better than anyone stepped in. Ken sat me down and told me that we were going to take Chelsey home, that we could handle this, and that we were not going to run and hide. Even though I knew he was right, I wasn't convinced. He finally said, "What choice do we have, Jane?" No choice.
Ken dropped us off at home and then took all the prescriptions to a pharmacy to be filled. He was gone a long time. When he returned home with two full paper grocery bags full of supplies, I could tell something was wrong. We had a house full of supportive people, but it didn't matter. I took the bags from him, and he started to cry. I remember telling him everything was going to be all right because we were going to do this together. I reminded him of his words to me a few hours earlier. From that point on I believe we have held each other together. I love him.
Chelsey is an amazing individual. From the beginning of this ordeal, she has been rock solid. She sees things from a practical, no-nonsense, matter-of-fact way.
"Mom, do we have to do this?" she asks when it came time to take her shot.
When I answered, "Yes", she said, "Okay, then let's just do it and stop worrying about it. What is the big deal?"
Maybe her child's innocence is the basis for this. Maybe she gains her strength from her big sis, Jenny.
Jenny is another amazing individual. She is Chelsey's confidant, and I am grateful they have each other. I believe without her sister, Chelsey would not have been able to deal with this in such a positive manner.
I worry (because that's what mom's do) about the effects all of this has had on Jenny. She had to set aside a lot of her problems because we were so overwhelmed with the diabetes issues and day to day living with it. I think the most difficult aspect of the disease at the beginning is its all consuming nature. I could not think about anything else except caring for Chelsey. I realized this was happening, but could not figure out a way to stop.
I feel it has changed the relationship between Jenny and me. I sense she does not confide her worries in me because she doesn't want to add to the stress I'm already under. I didn't mean for this to happen, but somehow it has. For that I am sorry, but I did not know then, nor do I know now, how things could have been different. I love her and believe she knows it. I know she loves me. Being a teen is an obstacle in itself without having to deal with a sister with diabetes. Life is not fair, but it is life. Jenny is growing into a beautiful young woman, and I admire her greatly. I don't always agree with her or understand what she does, but I am learning to accept her for who she is. She is my favorite older child. I know she will be fine.
I also believe Chelsey is going to be fine. New improvements are being made everyday, and because of medical technology she will also grow into a beautiful young woman and live a full life. Even when her glucose readings are up and down, or when she eats something I don't think she should, or she does something different than I feel she should, I have great faith in her character. She is my breath of fresh air. She is my favorite younger child.
During the past three years, we have grown in different ways. We have been fortunate to meet people who are so dedicated to helping others that I believe God has a wonderful place for them. I have discovered that children with diabetes are very special people. I know there are times when they don't want to be special, but for the most part they are very happy, full of life, loving individuals.
I have never met a more determined group of people than children who have diabetes. Carrie and Chelsey are inspirations to us all. We have learned how important friends and family are, and for that I say thank you. I have also learned that as time goes by things get easier. I still don't like it, but am slowly accepting this aspect in our lives. Each Valentine's Day represents another anniversary that we have beaten the "Big D," and to Ken, Jenny and Chelsey, I say, "I love you."
Jane receives e-mail at [email protected].
Original posting: 17 Oct 1997
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