We were so busy dealing with the medical reality of our daughter's condition that we weren't taking any time to think about how we felt about it all. We were calmly and efficiently handling everything and we didn't want to "lose it" by looking at our feelings. Actually, we were kept so busy learning and doing things that we didn't have time to think.
Then came Saturday morning. No teacher, no dietician, no students, no homework. My husband was spending the morning with our other kids so I was alone. I asked one of the volunteer Grandparents to sit with my daughter so I could go for breakfast. The coffee shop was closed for half an hour so I went for a walk outside. I kicked the leaves and walked among the trees all the way around the front of the hospital. It was very cool and crisp. It felt wonderful to be outside, alone, and quiet. When I got back in they were still closed, so I toured around inside the building. It was very quiet everywhere.
By the time I got my breakfast, I'd been walking for almost an hour. By the time I ate my way to the toast and jam, my eyes were full of tears. I worked hard to make them stay in. By the time I got to my tea, they were streaming down my face. I thought, "Oh well, people are used to that around here." But it just kept coming. By the time I got a pile of serviettes to wipe my nose I knew I couldn't stop so I headed for the elevator. When the right elevator finally came I headed for the chapel.
By the time I got to the fourth floor my whole body was shaking with wrenching sobs so I went into the chaplain's office instead and found someone to talk to (who luckily also had a full box of kleenex.) It was the first time I had said it. "My baby has diabetes. She isn't going to get better." I didn't need words of comfort or advice. I just needed to talk. To say all the things that had been floating around the edges of my thoughts. To say them out loud to a perfect stranger. To make them real. And most of all, I needed to cry and cry and cry. I didn't even feel it coming.
Our son was 14 months old when he was diagnosed with diabetes. I had taken him to our family doctor and got sent directly to the hospital. Do not pass go, do not collect $200! I phoned my wife at work to let her know what was happening, but when she got to the phone, I choked up and couldn't even talk. I had to pass the phone to someone else to explain things to her.
For a very short while, we were sort of relieved to finally find out what was wrong with him. After that, we felt just numb. It took a few days before we felt anything at all. Then we went through a roller-coaster ride of feelings from anger, rage, and horror to despair, sadness, worry, and uncertainty. We felt guilty that something we had done may have caused this. (Our son had spent most of the summer in the sandbox eating sand, and deep down, I thought something in the sand had done this to him, and I hadn't stopped him.)
When I was alone, I fell apart. Most of it was emotional. I was supposed to protect my children and take care of them and there was NOTHING I could do about this disease. I felt so helpless. But some of the tears were just plain old fatigue. My wife stayed at the hospital most of the time and I drove back and forth from the country and tried to spend time with our other kids. I was so very tired.
How did I feel at first? I refused to believe it was happening to us. There had to be a mistake. I wanted a different doctor. I wouldn't have anything to do with needles and tests. I was rude to the dietician. I guess I thought that I could make it all disappear by not cooperating. Then, when I couldn't deny it any longer, I had to find someone to blame it on instead. I know I wasn't very pleasant to be around at the hospital. That was six years ago. All those feelings are gone now, but I remember them like it was yesterday. Those first few months were one of the hardest times of my life.
When diabetes first came into our family, we met it head on. If this was the way it was going to be, then we were going to be very best at doing it. The best blood testers! The best injection givers! We wrote away or called every company for samples to find the needles and lancets that hurt the least. We practised and tried them out on each other. We read every label on every package in Safeway. We read everything we could get our hands on. We ordered books and videos in from the public library for us and for our children. We involved every member of the family in the diabetes care. Even the little kids could open the wipes and put the used supplies in the "special" garbage.
We were told that sooner or later, the chronic nature of the disease would finally hit us. It did . . . just before Christmas. The diabetes had taken over our lives. No one had clean clothes, the house was a disaster area, dishes were piled everywhere. And the diabetes tasks were really getting to us too. Some days I didn't know if I could do one more test. One day, I poked my daughter's finger and it BLED. It bled down her finger, down her wrist, down her arm. It bled all over my hands. It bled onto the high chair. As I tried to get it stopped, she smeared the blood onto her face and over her ears. That was it! I'd had it. All my determination to be the very best diabetic care giver went out the window. I wasn't going to do this anymore!
It was actually a good turning point for us. We saw that the diabetes was controlling us. Once we realized that, we were able to get our life back and now diabetes is just a part of it, not all of it.
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Last Updated: Wednesday March 16, 2005 15:44:49
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